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1 PART IThe Field of Pediatrics Since the late 19th century, pediatrics has been the only discipline dedi cated to all aspects of the care and well being of infants, children, and adolescents, including their healththeir physical, mental, social, and psychologic growth and developmentand their ability to achieve full potential as adults. The importance of scientific inquiry and research discovery in pediatrics and related subspecialties was cemented by the creation of the National Institute for Child Health and Development (NICHD) in 1962. As the earliest pediatricians focused on social and environmental issues that affected health (e.g., housing, sanitation, and poverty), so too are todays pediatricians (e.g., racism, poverty, and other socioenvironmental influences). In 1959 the United Nations (UN) issued the Declaration of the Rights of the Child, articulating the universal presumption that children have fundamental needs and rights. However, the United States is the only UN member that has not yet ratified these rights. The pediatricians purpose is to advance the well being of children, and thus pediatricians must be concerned with specific organ systems, genetics, and biologic processes and also with environmental, psycho social, cultural, and political influences, all of which affect the health and well being of children and their families. Pediatricians must be advocates for the individual child, their families, and communities because children cannot advocate wholly for themselves. Pediatricians must serve as advocates of all children irrespective of culture, religion, gendergender identity, sexual orientation, race or ethnicity, ability, place of birth, or geographic boundaries. The more politically, econom ically, or socially disenfranchised a population is, the greater the need for advocacy for its children and for those who support children. Youth are often the most vulnerable persons in society, and thus their needs require special attention. As boundaries between nations blur through advances in media, transportation, technology, communication, and economics, a global, rather than a national or local, perspective for the field of pediatrics becomes both a reality and a necessity. The interconnectedness of health issues across the world has achieved widespread recognition in the wake of new and emerging ill nesses, such as COVID 19, Zika, Ebola, and severe acute respiratory syndrome (SARS), as well as familiar and persistent illnesses, such as malaria, tuberculosis, HIVAIDS, and vaccine preventable illness. Additionally, health issues transcend communicable disease and are influenced by global events, such as war, ethnic wars, mass shootings, bioterrorism, the burning of the Amazon rainforest, and the growing severity of wildfires, storms, drought, and hurricanes brought about by climate change to very specific events, such as the earthquake in Haiti in 2010; the displacement of families during the Syrian refugee crisis in 20162018; the White supremacist attack on a mosque in Christchurch, New Zealand, livestreamed in 2019; and George Floyds and Breonna Taylors murders in 2020. VITAL STATISTICS ABOUT CHILDRENS HEALTH GLOBALLY From 1990 to 2020, the world population grew at an annual rate of 1 per year, down from 1.3 during the prior 20 years, to reach a popula tion of nearly 8 billion
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people. The population growth rate continues to decline. The Pew Research Center projects the population to reach 10.9 billion people in 2100 with a growth rate of less than 0.1 at that time because of the fall in fertility rates. Africa is the only continental region that is predicted to continue to have strong population growth, as the 20 countries with the highest birthrates currently are all located in Africa. By 2100, the countries of India, China, and Nigeria are estimated to be the largest. In 2019, the average birthrate in the world was 17.9 births per 1,000 population, with a range from 461,000 in Niger to 6.01,000 in Monaco. The most populous countriesChina (18.5 of the world population), India (17.7), and the United States (4.3)have birth rates of 11, 18, and 11 per 1,000 population, respectively, which were all trending down from previous years. Worldwide, there are roughly 2.5 billion youth under 19 years old, which accounts for approximately one third (32) of the worlds population. The African region boasts the largest share of youth under 15 at 40 compared with 26 globally. Despite global interconnectedness, the health of children and youth varies widely between and within regions and nations, depending on several interrelated factors. These include (1) economic conditions, (2) educational, social, and cultural considerations, (3) health and social welfare infrastructure, (4) climate and geography, (5) agricultural resources and practices, which account for nutritional resources, (6) stage of industrialization and urbanization, (7) gene frequencies for certain disorders, (8) the ecology of infectious agents and their hosts, (9) social stability, and (10) political focus and stability. Although genetics, biology, and access to affordable and quality healthcare are important determinants, social and structural influences on health outcomesthe physical environment, political and economic condi tions, and social, cultural, and behavioral considerationsplay as great a role, if not greater. To ensure that the needs of children and adults worldwide were not obscured by local needs, in 2000 the international community estab lished eight Millennium Development Goals (MDGs) slated to be achieved by 2015. Although all eight MDGs affect child well being, MDG 4 was exclusively focused on children: to reduce the under 5 mortality rate (U5MR) by two thirds between 1990 and 2015. It was estimated that poor nutrition contributed to more than one third of the deaths worldwide in children 5 years old, so many of the efforts to reach this goal centered on increasing household food security. There has been significant progress toward this goal; the worldwide U5MR decreased by 60 between 1990 and 2021, from 93 deaths per 1,000 live births in 1990 to 38 in 2021. However, the World Health Orga nization (WHO) cites that between 5.2 and 5.4 million children died worldwide from preventable or treatable causes. Infants younger than 28 days account for over half the deaths, followed by children age 1 11 months, and then by children age 1 4 years old. Children in sub Saharan Africa are 9 times more likely to die before
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age 5 than children in the developed areas of the world (see Fig. 3.1). School children (ages 5 9 years old) also experienced a large decline in mortality since the year 1990 related to lower prevalence of infectious diseases. The infant mortality rate globally (2023) is 27.4 deaths per 1,000 live births, with female infants having a lower rate than male infants. The child death rates in the first year of life were highest in Afghani stan (106.8), Somalia (88.0), and Central African Republic (84.2) per 1,000 live births. In the least developed countries, as classified by the UN, this rate was 45 per 1,000, and the rate was 4 per 1,000 for high income countries. The causes of infant and under 5 mortality differ greatly between developed and developing nations. The leading causes of under 5 mortality are preterm birth and birth related asphyxia trauma, pneumonia, diarrhea, and malaria (Fig. 1.1). As compared with higher resourced countries, more children less than 5 years old in lower resourced countries die from nonbirth related causes (see Fig. 3.4). In developing countries, over half of the deaths in children less than 5 years old resulted from infectious and parasitic diseases, including diarrheal disease (10 of deaths) and pneumonia (15). Neonatal Chapter 1 Overview of Pediatrics Lee M. Pachter and Nia J. Heard Garris Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 2 Part I u The Field of Pediatrics causes contributed 12, congenital defects 9, and malaria, AIDS, and measles accounted for the other causes of death. In the United States, pneumonia and influenza accounted for only 2 of under 5 deaths, with only negligible contributions from diarrheal diseases and malaria (Table 1.1). Although unintentional injuries in developing countries are a proportionately less important cause of mortality than in devel oped countries, the absolute rates and contributions of these injuries to morbidity are substantially greater. In the United States, the top causes of unintentional injury include unintentional suffocation, drowning, motor vehicle collision, and fire. Other causes accounted for 5 of total mortality within this age group (Tables 1.2). Violence is a sig nificant contributor to injury related mortality in all child age groups (Tables 1.2 and 1.3). Globally (2023), the life expectancy at birth is 73.2 years old, with females at 76 years and males at 70.8 years. THE CHANGING PEDIATRIC WORLD A profound improvement in child health within industrialized nations occurred in the 20th century with the introduction of vaccines, anti biotic agents, improved hygienic practices, and attention to scientific clinical practice. Efforts to control infectious diseases were comple mented by better understanding of the role of nutrition in prevent ing illness and maintaining health. In the United States, Canada, and parts of Europe, new and continuing discoveries in these areas led to establishment of publicly funded well child clinics for low income families. Although
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the timing of infectious disease control was uneven around the globe, this focus on control was accompanied by significant decreases in morbidity and mortality in all countries. Later in the 20th century, with improved control of infectious diseases through more effective prevention and treatment (including the eradica tion of polio in the Western hemisphere), pediatric medicine in indus trialized nations increasingly turned its attention to a broad spectrum of noninfectious acute and chronic conditions. These included potentially lethal conditions in addition to temporarily or permanently disabling conditions. Advances occurred in the diagnosis, care, and treatment of leukemia and other neoplasms, cystic fibrosis, sickle cell disease, diseases of the newborn infant, congenital heart disease, genetic defects, rheu matic diseases, renal diseases, and metabolic and endocrine disorders. Until the 1970s and early 1980s, children affected with sickle cell disease often died within the first 3 years of life, often from overwhelm ing sepsis caused by encapsulated bacteria. In the 1980s a multicenter study showed that early initiation of penicillin prophylaxis led to an 84 risk reduction for pneumococcal sepsis. Life expectancy for those with sickle cell disease increased when penicillin prophylaxis was initi ated early in life. The use of prophylactic penicillin became the stan dard of care, increasing the importance of early detection of sickle cell disease (which led to expanding universal newborn screening) and paving the way for advances in the chronic management of the disease, including transfusion therapy, radiographic screening for silent cere bral infarctions, hydroxyurea as a disease modifying therapy, and now, gene altering therapies. The success of penicillin prophylaxis likely led to a more rapid rate of innovation in the diagnosis and management of the disease as a result of increased life expectancy. Today 95 of indi viduals born with sickle cell disease will live to their 18th birthday, and most will survive until their fifth decade. Similarly, the treatment of acute lymphoblastic leukemia (ALL), the most common pediatric malignancy, has also shown amazing 1.39 8.14 0.58 1.69 2.40 4.86 14.94 17.8212.41 6.47 9.79 8.76 4.55 6.21 HIVAIDS Diarrheal diseases Tetanus Measles Meningitisencephalitis Malaria Acute lower respiratory infections Prematurity Birth asphyxia and birth trauma Sepsis and other infectious conditions Other communicable, perinatal and nutritional conditions Congential anomalies Other noncommunicable diseases Injuries Fig. 1.1 Global causes of death under the age of 5 years. Table 1.1 Ten Leading Causes of Death by Age Group, United States 2018 10 leading causes of death by age group, United States 2018 Rank 1 14 59 Age groups 1014 1524 1 Congenital anomalies 4,473 Unintentional injury 1,226 Unintentional injury 734 Unintentional injury 692 Unintentional injury 12,044 2 Short gestation 3,679 Congenital anomalies 384 Malignant neoplasms 393 Suicide 596 Suicide 6,211 3 Maternal pregnancy comp. 1,358 Homicide 353 Congenital anomalies 201 Malignant neoplasms 450 Homicide 4,607 4 SIDS 1,334 Malignant neoplasms 326 Homicide 121 Congenital anomalies 172 Malignant neoplasms 1,371 5 Unintentional injury 1,168 Influenza and pneumonia 122 Influenza and pneumonia 71 Homicide 168 Heart disease 905 6 Placenta cord membranes 724 Heart
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disease 115 Chronic lower respiratory disease 68 Heart disease 101 Congenital anomalies 354 7 Bacterial sepsis 579 Perinatal period 62 Heart disease 68 Chronic lower respiratory disease 64 Diabetes mellitus 246 8 Circulatory system disease 428 Septicemia 54 Cerebro vascular 34 Cerebro vascular 54 Influenza and pneumonia 200 9 Respiratory distress 390 Chronic lower respiratory disease 50 Septicemia 34 Influenza and pneumonia 51 Chronic lower respiratory disease 165 10 Neonatal hemorrhage 375 Cerebro vascular 43 Benign neoplasms 19 Benign neoplasms 30 Complicated pregnancy 151 Courtesy Centers for Disease Control and Prevention, https:www.cdc.govinjurywisqa rspdfleadingcausesofdeathbyagegroup2018 508.pdf. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 1 u Overview of Pediatrics 3 advances. Five year survival rates have increased from 10 in the 1960s to 90 in 2023. Cystic fibrosis has shown improvements in survival as well. In the 1960s, most children with cystic fibrosis did not live to school age. With advances in pulmonary and nutritional therapies, as well as earlier initiation of these therapies secondary to earlier identification through newborn screening, a child born with cystic fibrosis in 2010 has a projected life expectancy of 39 56 years. These major advances in the management of chronic diseases of childhood were accomplished when significant improvement occurred in the prevention and treatment of acute infectious diseases, at least in industrial countries. This allowed human and economic resources to shift toward addressing chronic disease. However, infec tious diseases continue to cause significant morbidity and mortality throughout the world. In the fall of 2021, the WHO recommended the use of the RTS,SAS01 malaria vaccine for children in areas of moderate and high levels of transmission of Plasmodium falciparum, which is the most prevalent cause of malaria in Africa. This historic declaration holds great promise for improving childrens health, as more than 250,000 African children under 5 die from malaria each year. The coronavirus disease 2019 (COVID 19) pandemic has proved to be an unremitting global health challenge that has not only affected health but also changed and influenced the socioeconomic lives of people throughout the world. THE NEW NORMAL: PANDEMICS Since COVID 19 was first reported and identified in Wuhan, China, in 2019, it has radically and fundamentally affected both the public health and global health landscapes (see Chapters 311 and 449.1). The identifica tion of COVID 19 and development of a vaccine unfolded over the course of 1 year, which was a testament to the importance and critical need for scientific research and rapid clinical implementation. We learned that children could present with or without symptoms and were important factors in community based viral transmission. Whereas many children experienced minor illnesses, others expe rienced more severe illnesses, which were related to underlying chronic conditions, such as asthma or the use of medical devices for children with special healthcare needs, and around 1 of children would go on to
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develop multiinflammatory syndrome (MIS C). This condition could be lethal, but most children who received timely care improved. As of spring 2023, there were over 766 million cases and nearly 6.9 million deaths from COVID 19, and the United States had the highest number of cases and deaths throughout the world. Chil dren in the United States accounted for 6 million COVID 19posi tive cases, with 0.12.0 of children hospitalized and 0.03 leading to child deaths. Although children were less affected by COVID 19related illnesses than their adult counterparts, they experienced significant mental health and psychosocial challenges, grief, and loss. Over 1.5 billion Table 1.2 Ten Leading Causes of Injury Deaths by Age Group Highlighting Unintentional Injury Deaths, United States 2018 10 leading causes of injury deaths by age group highlighting unintentional injury deaths, United States 2018 Rank 1 14 59 Age groups 1014 1524 1 Unintentional suffocation 977 Unintentional drowning 443 Unintentional MV traffic 341 Homicide unspecified 152 Homicide firearm 57 Unintentional drowning 86 Unintentional drowning 39 Unintentional drowning 431 Undetermined suffocation 45 Suicide suffocation 361 Unintentional MV traffic 6,308 Unintentional MV traffic 360 Unintentional poisoning 4,245 Homicide firearm 4,107 Suicide firearm 2,995 Suicide suffocation 2,237 Suicide poisoning 454 Unintentional MV traffic 292 Homicide unspecified 125 Unintentional MV traffic 80 Homicide other spec., classifiable 68 Unintentional fireburn 123 Unintentional drowning 130 Unintentional suffocation 112 Unintentional pedestrian, other 70 Unintentional other land transport 20 Homicide suffocation 30 Homicide other spec., classifiable 66 Homicide unspecified 17 Unintentional suffocation 43 Undetermined unspecified 30 Homicide firearm 54 Adverse effects 16 Unintentional other land transport 37 Homicide cutpierce 256 Unintentional natural environment 22 Unintentional natural environment 38 Unintentional pedestrian, other 15 Unintentional poisoning 23 Undetermined poisoning 224 Two tied 18 Unintentional firearm 30 Homicide other spec., NECN 14 Suicide poisoning 20 Suicide fall 205 Unintentional suffocation 30 Suicide firearm 202 Homicide firearm 134 Unintentional fireburn 99 Unintentional fireburn 52 2 3 4 5 6 7 8 9 10 Courtesy Centers for Disease Control and Prevention, https:www.cdc.govinjurywisqa rspdfleadingcausesofinjurydeathshighlightingunintentional2018 508.pdf. Table 1.3 Ten Leading Causes of Injury Deaths by Age Group Highlighting Violence Related Injury Deaths, United States 2018 10 leading causes of injury deaths by age group highlighting violencerelated injury deaths, United States 2018 Rank 1 14 59 Age groups 1014 1524 1 2 3 4 5 6 7 8 9 10 Unintentional suffocation 977 Homicide unspecified 125 Unintentional MV traffic 80 Homicide other spec., classifiable 68 Undetermined suffocation 45 Unintentional drowning 39 Homicide suffocation 30 Undetermined unspecified 30 Unintentional natural environment 22 Two tied 18 Unintentional drowning 443 Unintentional MV traffic 292 Homicide unspecified 152 Unintentional fireburn 123 Unintentional suffocation 112 Unintentional pedestrian, other 70 Homicide other spec., classifiable 66 Homicide firearm 54 Unintentional natural environment 38 Unintentional firearm 30 Unintentional MV traffic 341 Unintentional drowning 130 Unintentional fireburn 99 Homicide firearm 57 Unintentional suffocation 30 Unintentional other land transport 20 Homicide unspecified 17 Adverse effects 16 Unintentional pedestrian, other 15 Homicide other spec., N 14 NEC Suicide suffocation 361 Unintentional MV traffic 360
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Suicide firearm 202 Homicide firearm 134 Unintentional drowning 86 Unintentional fireburn 52 Unintentional suffocation 43 Unintentional other land transport 37 Unintentional poisoning 23 Suicide poisoning 20 Unintentional MV traffic 6,308 Unintentional poisoning 4,245 Homicide firearm 4,107 Suicide firearm 2,995 Suicide suffocation 2,237 Suicide poisoning 454 Unintentional drowning 431 Homicide cutpierce 256 Undetermined poisoning 224 Suicide fall 205 Courtesy Centers for Disease Control and Prevention, https:www.cdc.govinjurywisqa rspdfleadingcausesofinjurydeathshighlightingviolence2018 508.pdf. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 4 Part I u The Field of Pediatrics children living through the pandemic faced unprecedented learning challenges because of widespread school closures and dependence on electronic devices and stable internet connections and widening edu cational disparities, especially for those in poverty, children of frontline workers and single parents, and those already marginalized. Addition ally, children who received nutritional support in school or received in school or in home services to support their learning andor devel opmental needs (e.g., speech therapy, specialized teaching, or other ancillary therapies) also faced disruptions. These disruptions and stress contributed to an increase in mental and emotional health burdens, such as depression, anxiety, isolation, and fear; however, these burdens were unable to be matched with a sufficient number of mental health care professionals to provide needed care. The pandemic also disproportionately affected poor families and fam ilies of color in other ways. Children in these families faced increased risk of economic hardship and instability, loss of caregivers, and other challenges. Additionally, concerns about all childrens safety and welfare continued and were highlighted, as noncustodial adults had less access and exposure to children who may have experienced physical, sexual, or emotional abuse. Finally, children with special healthcare needs expe rienced insurmountable challenges throughout the pandemic, such as not receiving essential medicines, medical supplies, and nursing or home healthcare services because of supply chain disruptions and staff ing shortages. So although children largely were spared from the illness severity, there were undoubtedly victims of the sequelae that the pan demic brought forth. Now, in partnership with parents, communities, schools, and governments, pediatricians will need to continue to advo cate for and support children to mitigate COVID 19s effects on children. THE NEW MORBIDITIES Given the advances in public health in decreasing morbidity and mor tality in infectious diseases (immunization, hygiene, antibiotics), along with technologic advances in clinical care that improved survival for many chronic illnesses, attention was given to what was described in the 1980s and 1990s as the new morbiditiesbehavioral, develop mental, psychosocial conditions, and societal inequities, which have been shown to be increasingly associated with suboptimal health out comes and quality of life. The prevention, early detection, and manage ment of these types of child health problems should be a central focus of the field of pediatrics and require an expansion in the knowledge base regarding (1) physical and environmental factors affecting behav ior, (2)
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normal child behavior and development, (3) health behaviors as they pertain to child health, and (4) mild, moderate, and severe behav ioral and developmental disorders. Accomplishing this would require reconceptualizing professional training, improving clinical communi cation and interviewing skills, expanding mental health resources for children, and shifting time allocation during child health supervision visits to address these concerns. In 2001 this issue was revisited and reemphasized the need to address environmental and social aspects in addition to developmental and behavioral issues (Table 1.4). This included violence, firearms, substance use, food insecurity, and school problems, as well as poverty, unhoused (homelessness), single parent families, divorce, social media, incarceration, and childcare. Although at first glance this list seems daunting and beyond the scope of what pediatricians typically address (i.e., physical health and development), many of these behavioral, environmental, and psychosocial prob lems (which all fall under what was termed the social determinants of health but are better characterized as the social and structural influences on health) account for a large proportion of variance in health outcomes in children and youth. The role of pediatrics and the boundaries of clinical practice needed to change in order to address these salient contributors to child health and well being. Newer mod els of clinical care that rely on close collaboration and coordination with other professionals committed to child welfare (e.g., social work ers, psychologists, mental health providers, educators) were developed. As this model expanded, so did the role of the family, in particular the childs caregiver, from a passive recipient of professional services to a more equitable and inclusive partner in identifying the issues that needed to be addressed, as well as helping decide which therapeutic options had the best fit with the child, the family, and the condition. The framing of salient child health issues under the new morbid ity concept acknowledges that the influences on health are hetero geneous but interconnected. Biology, genetics, healthcare, behaviors, social conditions, and environmental influences should not be viewed as mutually exclusive determinants; they exert their influ ences through complex interactions on multiple levels. For example, epigenetic changes that result from specific social and environmental conditions illustrate the influence of context on gene expression. Studies have demonstrated that while each of these interrelated influ ences are important for optimal health, development, and well being, the greatest contributions to health outcomes occur in the behavioral, social, and environmental domainsthe social and structural influences on health. From 40 to 70 of the relative variation in certain health outcomes are caused by social and economic conditions, health behav iors, and environmental factors, as well as structural inequality in the healthcare domain. Whereas traditional medical education and clinical practice emphasized the biologic and genetic determinants of health, the recognition of the new morbidities as a focus of child healthcare provi sion reinforced the need to address social and structural influences as a key component of pediatric care, training, and research. The New New Morbidities The new morbidities concept brought into perspective the
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importance of addressing the social determinants of health, as well as the increasing Table 1.4 A Development History of the New Morbidities in Child Health THE NEW MORBIDITIES (19821993) THE NEW MORBIDITIES REVISITED (2001) THE NEW NEW MORBIDITIES (2010 TO PRESENT) Behavioral disordersmental health School problems Adverse childhood experiences (ACEs) Family crisis Mood and anxiety disorders Toxic stress Abuse and neglect Adolescent suicidehomicide Allostatic load Long term disease Firearms in home Chronic illnesses of lifestyle (e.g., obesity, type 2 diabetes, hypertension) Substance abuse School violence Behavioral conditions (autism, ADHD, depression, anxiety) School difficulties Drug and alcohol abuse Food insecurity HIV Oral health Effects of media Witnessing communityinterpersonal violence Poverty Peer victimizationbullying Homelessness Discrimination Single parent families Effects of divorce Struggle of working parents Child care quality and policy Each column adds further categories and refinements to prior columns. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 1 u Overview of Pediatrics 5 prevalence and salience of chronic physical and behavioral health con ditions in pediatric healthcare. Since then, advances in epidemiology, physiology, and epigenetics have expanded the scope of inquiry into the effects of a broad range of health influences and provided more sophisticated explanatory models for the mechanisms that explain their effects (see Table 1.4). Racism Although racism is known as Americas Original Sin, racism and racial discrimination is a worldwide problem (see Chapter 2.1). Racism can occur at the systemicstructural, interpersonal, and internalpsychologic levels. Structural racism is the hierarchical grouping of people based on physical attributes, including skin color, which assigns value to those groups and then allocates certain resources, privileges, and power to the dominant or in group. Structural racism built on White supremacy and hegemony has been a persistent and plaguing problem for over 400 years. It is racism and racist ideology that have created and perpetuated pediatric health disparities by race (see Chapters 2 and 2.1). In the after math of the state sanctioned violence against Black people, there are calls for the end of racism, police actions, and White supremacy ideol ogy throughout the world. The field of pediatrics did not go untouched in these discussions, and numerous articles were presented about how to dismantle structural racism and equip pediatricians with the tools to do so. Importantly, pediatricians have been called to examine areas in which racism and harm are perpetuated through healthcare, through policies, practices, beliefs, and ideals. Racism along with adverse childhood expe riences are some of the pressing challenges for the modern day pediatri cian in promoting equitable health access and outcomes. The issue of racism is even more relevant by understanding that of the 73,000,000 children in the United States, 50 are nonWhite, non Hispanic (26 Hispanic, 14 Black, 5 Asian, 5 other), 20 speak a language other than English at home, and 25 are immi grants or children of immigrants. Adverse Childhood
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Experiences Adverse childhood experiences (ACEs) are stressful events experi enced during childhood that can have profound health consequences both in childhood and throughout the life course into adulthood. ACEs were initially defined as abuse (physical, emotional, sexual), neglect (physical and emotional), and household challengesfamily dysfunction (parental spousal abuse, mental illness in household, household substance abuse, incarceration of household member, parental separation or divorce). Retrospective studies have shown a graded dose response effect of ACEs on future adult health of those who experience the adverse event in childhood. For example, more childhood adversity is associated with significantly increased risk in later life of ischemic heart disease, chronic obstructive pulmonary disease, liver disease, depression, obesity, and cancer. People who suffer 6 ACEs die almost 20 years earlier than those who had not experienced ACEs. Although the original conceptualization of ACEs included family level psychosocial trauma, recent attempts have been made to expand the concept to include macro level stressors, such as those encoun tered in the neighborhood and community (Table 1.5). These include witnessing violence in the community, poverty, bullying and peer victimization, peer isolation, living in unsafe neighborhoods, low neighborhood social capital, living in foster care, and experiencing dis crimination or racism. ACEs and other psychosocial traumas may influence health through a number of mechanisms. ACEs are associated with adoption of risky behaviors such as substance use and early initiation of sexual activity, which in turn may increase the risk of chronic diseases such as lung cancer, liver disease, obesity, human papillomavirus (HPV) infection and cervical cancer, chronic lung disease, and premature mortality. Childhood trauma can also disrupt neurodevelopment during critical stages of brain development and contribute to social, emotional, and cognitive impairment. Finally, ACEs can result in toxic stress and lead to the dysregulation of normal physiologic processes (see Toxic Stress and Allostatic Load later). The documentation of cumulative ACE scores has value from a population based epidemiologic perspective but has limited clinical utility. An ACE score gives no information regarding specific adver sities and traumas, nor information regarding which interventions may be required. Although ACE screening may not be the optimal approach to incorporating a trauma lens into individual clinical care, a discussion around ACEs can help the clinician to begin collabora tive communication with patients and families on the importance of psychosocial stress and adversity in health and well being in childhood and throughout the life course. Furthermore, it becomes important to understand that individuals are not merely a sum of their traumas. Although the recognition of the importance of ACEs and trauma informed care has resulted in the reframing of the question whats wrong with you to whats happened to you, this needs to be seen as a transition step toward the goal of healing centered care, which includes an emphasis not only on adver sity but also on assets (Fig. 1.2). Those assets may be external (e.g., family, community, peers, mentors) or internal (e.g., resilience, posi tive coping strategies, locus of control). In a healing centered
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model of care, the evolution of the question whats wrong with you to what happened to you gets further refined to include whats right or posi tive about you. Toxic Stress and Allostatic Load The effects of stress are moderated by the intensity of the stress, the bio logic response to the stress, and the social and physical environment in which the stress is experienced. Toxic stress occurs when a child expe riences stressful events that are chronic, intense, or prolonged and are inadequately buffered by the childs social support system (most impor tantly, parents and adult caregivers). Toxic psychosocial stress influ ences physical health by producing allostatic load, or pathophysiologic dysregulation of normal regulatory systems. Allostatic load is the wear and tear that the body and its regulatory mechanisms experience in response to chronic, unbuffered stress. The systems that can be affected through allostatic load include the neuroendocrine, cardiovascular, immune, and metabolic systems. Dysregulation of stress hormones in the hypothalamic pituitary adrenal (HPA) and sympathetic adrenal medullary (SAM) systems, inflammatory cytokines, hormones (e.g., insulin), immune factors (e.g., fibrinogen, C reactive protein), and Table 1.5 Adverse Childhood Experiences CATEGORY ITEMS Abuse and neglect Physical abuse Physical neglect Emotional abuse Emotional neglect Sexual abuse Family dysfunction Intimate partner violence Substance use in household Mental illness in household Parental separation or divorce Family member incarcerated Parental discord Community level adversity Witnessing community violence Neighborhood safety Lack of neighborhood connectedness trust Experiencing discrimination Others Being bulliedpeer victimization Living in foster care Social isolation Low socioeconomic statuspoverty Items included in original Kaiser ACE study. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 6 Part I u The Field of Pediatrics cardiovascular biomarkers (e.g., blood pressure) can occur from chronic stress and result in pathophysiologic conditions associated with chronic diseases. Chronic stress can also have effects at the genetic level. Stud ies of cellular aging have shown that chronic stress decreases telomere length, a determinant of aging on the cellular level. Epigenetic changes, including differential immune system DNA methylation, may occur after child abuse and posttraumatic stress disorder (PTSD) potentially contributing to inflammatory and immune dysregulation. Pediatrics, developmental psychology, basic sciences, and public health have contributed significant advances to the study of the behav ioral, developmental, and social influences on child health. The influ ence of psychosocial stress brought about by environmental challenges, although always acknowledged as important, has taken on a new level of salience as epidemiologists have linked its occurrence to significant morbidities throughout the life course and as basic and clinical neuro science has provided a multilevel framework for understanding how behavioral and psychosocial issues get under the skin to cause physi ologic dysfunction and dysregulation. Such a framework can also be seen as a mechanism underlying health disparities (see Chapter 2). Ecobiodevelopmental Framework An ecobiodevelopmental framework has been proposed to integrate the overlapping influences of
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environmental (ecologic), biologic, and devel opmental factors into a model of health and illness. This model posits that ecology (or the social and physical environment) affects biology through physiologic disruptions and adaptations secondary to allostatic load mechanisms. The environment also influences development through life course science, which includes the effects of toxic exposures and child hood adversity on learning, cognitive, behavioral, and physical health throughout the life course. Stress induced biologic responses to adversity may negatively affect development and biologic health. Biology influences development though brain maturation and neuroplasticity, which in turn are also affected by inputs from the social and physical environment. The ecobiodevelopmental framework is consistent with the biopsychosocial model while adding a longitudinal life course developmental dimension. CHRONIC ILLNESS AND CHILDREN WITH SPECIAL HEALTHCARE NEEDS The care of children with chronic conditions has become an increasingly larger part of clinical pediatrics for both the pediatric subspecialist and the general pediatrician. Children and youth with special healthcare needs (CSHCN) are defined by the U.S. Maternal and Child Health Bureau as those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. According to the 20182019 National Survey of Childrens Health (NSCH), 14.1 million, or 19 of U.S. children, have a special health need. The 20092010 National Survey of Children with Special Health Care Needs (NS CSHCN) reports that almost one quarter (23) of U.S. households with children have a child with a special need. The conditions these children have are extremely heterogeneous, as shown in Table 1.6. Most of these children need specialty care in addition to primary care. In the United States, 0.40.7 of children fall into the category of highest medical complexity; these children account for 1533 of all healthcare spending for children. Children with medical complexity account for 70 of hospital readmissions. Nine of 10 CSHCN have functional difficulties in the sensory, cogni tive, movement, emotional, or behavioral domains (Table 1.7). More than 65 (7.2 million) of CSHCN have conditions that affect their daily activities, and 2.3 million families experience financial difficul ties because of their childrens special health needs. The fact that 25 of family members of CSHCN cut back work hours or stop working because of their childs special needs highlights the social and eco nomic impact of child chronic illness at both the individual and the national economic level. Pediatricians are typically the point persons in the professional care of these children and provide data and expert opinion to procure needed services and resources to the child in the clinic, home, schools, and com munity. Such demands require an efficient model of chronic care. SYSTEMS OF CARE Population Health Approach Because pediatric practice is increasingly spent working with patients and families who have chronic issues and conditions, new approaches to healthcare services delivery have been proposed. Whereas tradi tional practice models concentrate efforts toward the preventive and
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therapeutic needs of those patients who present for care, a popula tion health approach to care refocuses efforts to emphasize the need to address health from a community or population level perspective, with emphasis on identifying and addressing the needs of individuals and families who do not seek regular care or whose care is episodic and suboptimal from a prevention or management standpoint. Effec tiveness of such a system improves with greater collaboration between healthcare providers and payers (insurance companies) to identify gaps in care, with data surveillance systems and electronic health records (EHRs) and with an expanded cadre of healthcare personnel such as care coordinators, nurse practitioners, physician assistants, social workers, health navigators, and community health workers. Health care reimbursement modifications, such as incorporating value based External Family Peersfriends Other adults Community Neighborhood Social capital Assets Adversity Outcomes Internal Resilience Coping style Locus of control Spirituality Epigenetics Fig. 1.2 Healing centered care. Well being and outcomes are a func tion of an individuals assets and adversities. Table 1.6 Children with Special Healthcare Needs (CSHCN) HEALTH CONDITIONS Attention deficithyperactivity disorder Depression Anxiety problems Behavioral or conduct problems Autism spectrum disorder Developmental delay Intellectual disability Communication disorder Asthma Diabetes Epilepsy or seizure disorder Migraines or frequent headaches Head injury, traumatic brain injury Heart problems, including congenital heart disease Blood problems, including anemia or sickle cell disease Cystic fibrosis Cerebral palsy Muscular dystrophy Down syndrome Arthritis or joint problems Allergies List is not comprehensive and does not include all conditions that CSHCN may have. Adapted from Child and Adolescent Health Measurement Initiative. 200910 NS CSHCN: Health Conditions and Functional Difficulties. Data Resource Center, supported by Cooperative Agreement 1 U59 MC06980 01 from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA). Maternal and Child Health Bureau (MCHB). 2012. Available at www.childhealthdata.org. Revised 01272012. Editor Note: Community members and some healthcare workers refer to this disorder as hood disease. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 1 u Overview of Pediatrics 7 and quality of carebased models, if implemented correctly, may fur ther advance a population health approach to care. Medical Home The concept of the patient and familycentered medical home (PFCMH) approach to providing care is defined as a medical home that provides care that is accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effec tive. Patients and family members are key active participants, working with clinicians to identify priorities for and approaches to care (shared decision making; see Chapter 18). A key aspect of the PFCMH is care coordination. Care coordination addresses interrelated medi cal, social, developmental, behavioral, educational and financial needs to achieve optimal health and wellness outcomes. A care coordina tor is the point person on the team who prospectively identifies the patients and familys needs, concerns, and priorities for the healthcare visit, gathers pertinent
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information (lab results, consultations, educa tional plans, screeningtesting results), communicates with subspecial ists, and relays all important information to the clinical team before the patientfamily visit. After a healthcare visit, the care coordinator works with the family to address any ongoing concerns, directs efforts to schedule follow up appointments and referrals, and communicates information to all necessary parties. The care coordinator typically is not a physician. The intended result of care coordination is an efficient and comprehensive interaction between the pediatric team and the family, between primary care and specialty care, between ambulatory and inpatient care teams, and between the pediatric care team and the community based supports on which the patient and family depend. Provision of care consistent with the elements of a medical home has been associated with more accurate and early diagnosis, fewer emer gency department visits and inpatient hospitalizations, lower costs, fewer unmet needs, lower out of pocket medical costs, less impact on parental employment, fewer school absences, and better patient satis faction. According to the 2016 NSCH, 43 of U.S. CSHCN and 50 of U.S. children without a SHCN received coordinated, comprehensive care within a medical home. Medical and Health Neighborhood Although the medical home concept relates to practice transforma tion specific to primary care, a broadening of this concept has been proposed along two separate dimensions. The medical neighborhood expands the medical home concept and refers to coordinated and effi cient integration between primary care pediatricians and the subspe cialists, including integrated EHRs, efficient coordinated appointment scheduling, and enhanced communication. Such a system has the potential to provide a less stressful patient and family experience and could also lead to cost reduction and a decrease in medical errors. Another expansion and modification of the medical home is the health neighborhood concept. The health neighborhood is based on the recognition of the importance of coordination with community based and nonmedical providers to address comprehensively and efficiently the social and structural influences on health. Health neighborhoods include the healthcare providers (consistent with the medical home and neighborhood) but also involve services such as early intervention pro grams, the education system, childcare, community based behavioral and mental health services, legal services, nutritional support services, and other clinical and community based services that the patient and family need to access. The health neighborhood team helps families identify the needs of the patient, assists with referrals to appropriate agencies outside the healthcare system, and coordinates care. Some nonmedical services may be co located at the medical office. Medical legal partnerships (MLPs) are collaborations between the healthcare and legal systems and embed legal aid personnel in the medical clinic. These lawyers and legal paraprofessionals can provide direct ser vices to patients and families who have legal issues that may be affecting the childs health (e.g., housing code violations, utility shutoff, food insecu rity, immigration issues, educational accommodations, guardianship). In addition to providing direct services, MLPs train healthcare personnel in the legal, social, and structural influences on health and work with
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physi cians and others to advocate for policy change. Other nonmedical health neighborhood services that could be co located in the medical center include supplemental nutrition assistance programs, parenting programs, behavioral health services, and family financial counseling. Many, if not most, other services are located in the community. The health neighborhood model links families to these services and provides efficient ongoing coordination and communication. Com munity health workers or health navigators are paraprofessional team members who are community and culturally informed and serve as a coordinating link between the family, the medical home, and needed community services. Community health workers and health navigators can also provide patient and family education. Expanded care models such as these have the potential to achieve what the Institute for Healthcare Improvement calls the quadruple aim for healthcare: focusing on care (improving the patient experience with healthcare, quality care, and satisfaction), health (improving the health of populations, including emphasis on equity), provider satisfaction (joy in work), and cost (reducing per capita healthcare costs) (Fig. 1.3). Visit Elsevier eBooks at eBooks.Health.Elsevier.com for Bibliography. Table 1.7 Functional Difficulties in Children with Special Healthcare Needs (CSHCN) Experiencing difficulty with Breathing or respiratory problem Swallowing, digesting food, or metabolism Blood circulation Repeated or chronic physical pain, including headaches Seeing even when wearing glasses or contact lenses Hearing even when using a hearing aid or other device Taking care of self, such as eating, dressing, or bathing Coordination or moving around Using his or her hands Learning, understanding, or paying attention Speaking, communicating, or being understood Feeling anxious or depressed Behavior problems such as acting out, fighting, bullying, or arguing Making and keeping friends List is not comprehensive and does not include all functional difficulties that CSHCN may have. From Child and Adolescent Health Measurement Initiative. 200910 NS CSHCN: Health Conditions and Functional Difficulties. Data Resource Center, supported by Cooperative Agreement 1 U59 MC06980 01 from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). 2012. Available at www.childhealthdata.org. Revised 01272012. Health: Improving the health of populations (including equity) Cost: Reducing per capita healthcare costs Satisfaction: Joy in work for providers Care: Improving the patient care experience Fig. 1.3 The quadruple aim for healthcare. (Data from Bodenheimer T, Sinsky C. From triple to quadruple aim: care of the patient requires care of the provider. Ann Fam Med. 2014;12:573576.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 8 Part I u The Field of Pediatrics Health and illness are not distributed equally among all members in most societies. Differences exist in historical roots, risk factors, preva lence and incidence, manifestations, severity, and outcome of health con ditions, as well as in the availability and quality of healthcare. When these differences are modifiable and avoidable, they are referred to as dispari ties or inequities. The
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U.S. Department of Health and Human Services (DHHS) Healthy People 2030 report defines health disparity as a partic ular type of health difference that is closely linked with social, economic, andor environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disabil ity; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion. The U.S. Centers for Disease Control and Prevention (CDC) define health disparities as preventable differences in the burden of disease, injury, violence, or in opportunities to achieve optimal health experienced by socially disadvantaged racial, ethnic, and other population groups, and communities. Healthy People 2030 defines health equity as the attain ment of the highest level of health for all people. Achieving health equity requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and health care disparities. Health and healthcare disparities occur because of unequal distribution of resources that are inherent in societies that exhibit social stratification, which occurs in social systems that rank and categorize people into a hierarchy of unequal status and power. ROOT HISTORICAL CAUSES OF STRUCTURAL DETERMINANTS OF HEALTH AND HEALTH DISPARITIES Figure 2.1 displays a categorization of the multiple determinants of health and well being. Applying this categorization to health dis parities, conceptualizations of the root causes of health disparities emphasize the most modifiable determinants of health: the physical and social environment, psychology and health behaviors, socioeco nomic position and status, and access to and quality of healthcare (and the policies that place marginalized groups at greater risk based on these determinants). Differential access to these resources results in differences in material resources (e.g., money, education, health care) or psychosocial factors (e.g., locus of control, adaptive or risky behaviors, stress, social connectedness) that may contribute to dif ferences in health status. This section will explore several historical social and structural root contributors to health disparities (see also Chapter 2.1). Federal Policies and Economic Outcomes Redlining (19331960) A federally backed homeowner mortgage banking system, the Home owners Loan Corporation (HOLC), was created in the 1930s and graded neighborhoods on credit risk for investment and mortgage lending into four color coded levels that were outlined on city maps. The four color coded levels were based primarily on racial and ethnic demographics rather than economic factors, with the 2 most desirable codes being for more affluent White neighborhoods. Neighborhoods defined as Defi nitely Declining were marked in yellow and were older neighborhoods with mixed ethnic makeup, including lower income White residents and European immigrant residents, but no Black residents. Residents in these communities were allowed to get homeowner mortgages, but there was less overall economic development. Neighborhoods defined as Hazard ous were marked in red (hence the term redlined communities) and were where Blacks lived, including affluent Blacks. Residents in these
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neigh borhoods were denied homeowner mortgages and were systematically disinvested by local, state, and federal government policies. The Federal Housing Authority (FHA), created in 1934 to be the government entity that would federally secure homeowner mortgages, created underwriting manuals for banks with rules regarding lending practices that included denying loans to Black applicants and devaluat ing properties in redlined neighborhoods. Therefore from the 1930s to 1960s, 98 of FHA homeowner mortgage loans were given to White Americans. This led to decades of residential housing segregation. Redlining was officially outlawed by the Fair Housing Act of 1968; however, the impact of redlining continues. Urban Renewal (19491974) After World War II, city officials and city planners across the United States described urban areas as slums, full of poor people and in blight. At the same time, the Great Migration (19161970) changed the racial makeup for northern cities, when millions of rural southern Black farm workers, domestic workers, laborers, and their families left the harsh Jim Crow segregated conditions of the South and migrated to northern cities seeking a better life and improved economic conditions and opportunities. The leaders in northern destination cities sought to control and contain these southern Black Americans. The federal government passed the Housing Act of 1949 to provide funding to cit ies across the country to clear and redevelop the slums (called slum clearance). City leaders and planners used the funds to revitalize their downtown areas to woo suburban Whites for shopping and entertain ment and simultaneously target redlined communities to demolish old buildings and houses and move poor Black and brown residents into public housing facilities (called housing projects). In 1956, the Eisen hower administration passed the Federal Aid Highway Act of 1956 that created the national interstate system. Redlined communities were targeted for placement of these interstate highways that displaced Black and brown residents into segregated housing projects. All of these fed eral policies led to the following consequences affecting public health: Residential housing segregation: Fifty plus years of discriminatory homeowner lending practices, real estate practices, and economic disinvestment have led to hypersegregation of neighborhoods and resources. Black and Latinx residents are more likely to live in neigh borhoods where the majority of residents have incomes below the federal poverty level, which is referred to as concentrated poverty. Residents living in formerly redlined neighborhoods have poorer Chapter 2 Child Health Disparities Lee M. Pachter and Adiaha I.A.Spinks Franklin Behavior Social Medical Genetic Biology Environment Fig. 2.1 Determinants of health. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 2 u Child Health Disparities 9 health outcomes, including higher rates of asthma, cancer, heart disease, and premature birth and shorter life expectancies. They are at higher risk of being exposed to environmental toxins, including lead, mold, exhaust pollutants and greenhouse gases, that all con tribute to poor health. Residential housing segregation
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has other significant health consequences for Black and Latinx American chil dren, including living in food deserts (having few grocery stores in neighborhoods), digital deserts (lack of access to reliable high speed internet), having fewer green spaces, and few pharmacies. Economic disparities, racial wealth gap, and concentrated poverty: Federal policies during the 1930s and 1940s created the foundation for racial wealth gaps. The Social Security Administration and the Service mens Readjustment Act of 1944 (the GI Bill) were established to cre ate a middle class. The Social Security system was created to provide income to older adults. However, farmworkers and domestic workers were not included among the professionals that would pay into the So cial Security system. These occupations employed predominantly Black laborers, who did not benefit from the initial Social Security policy. The GI Bill provided former World War II military soldiers with low interest home, farm, and business loans; funds to pay for higher education; and unemployment assistance. White and Japanese American soldiers were granted the financial benefits from the GI Bill to buy homes and attend college. However, millions of Black soldiers were denied the GI Bill. First American (i.e., Indigenous Nations peoples) WWII veterans used the GI Bill to pay for a college education, but could not use the GI Bill to buy homes on reservations because reservation land was excluded from the GI Bill. Mexican American soldiers did not have full access to the benefits of the GI Bill for homeownership, but some were able to benefit from job training. Therefore millions of Black, Indigenous Nations peoples, and Mexican American WWII veterans did not re ceive all the financial and educational benefits of the GI Bill. White Americans have accumulated 10 times the wealth of Black Americans, which has transgenerational implications. Discriminatory hiring and firing practices place minoritized workers at higher risk of chronic un deremployment and unemployment. Additionally, there is an ongoing racial and gendered racial pay gap between White American men and women and men and women who are Black, Asian American, Latinx American, and Indigenous Nations peoples. In 2021, for every dollar a White American man made, Asian American women made 85 cents, Black women made 63 cents, Indigenous Nations women made 60 cents, and Latina American women made 57 cents. School segregation and educational underfunding: Public schools are funded by property taxes. In hypersegregated communities with concentrated poverty, schools are underfunded, with a 2019 study reporting a 23 billion funding gap between school districts with predominantly White students and school districts with predomi nantly Black, Latinx, and Indigenous Nations students. This fund ing gap leads to schools with less qualified teachers, less rigorous curricula, and fewer extracurricular activities. Black, Latinx, and Indigenous Nations students have overpolicing and harsher school punishment practices, as discussed further in Chapter 2.1. Schools are not teaching BIPOC students selfdiscipline; they are over punishing and criminalizing these students. Environmental injustice: There are racial disparities in who suffers the health consequences of climate change. Residential housing segrega tion
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and environmental policies have contributed to unequal exposure to environmental toxins. White Americans produce the majority of greenhouse gas emissions but experience less of the negative health ef fects of such emissions such as asthma, other chronic lung disease, can cer, and cardiovascular disease. Black and Latinx American children in hypersegregated neighborhoods are also more likely to be exposed to lead poisoning compared with their White American counterparts. Lead exposure increases the risk of health problems, including anemia, attention regulation problems, and learning problems. Increased expo sure to mold and other major asthma triggers contributes to disparities in asthma outcomes among children of color and poor children. Resi dential housing segregation also places communities of color at risk for poor water quality and the health consequences. Figure 2.2 illustrates the complex relations among multileveled fac tors and health outcomes. Historical social stratification factors, such as socioeconomic status (SES), race, and gender, have profound influ ences on environmental resources available to individuals and groups, including neighborhood factors (e.g., safety, environmental toxins, grocery stores, transportation, healthy spaces), social connectedness and support, work opportunities, and family environment. Much of the differential access to these resources results from historical discrimina tion on a systematic, institutional, and interpersonal level (see Chapter 2.1). Discriminatory policies place historically subordinated groups at greater risk of poorer health outcomes and psychologic function ing, including sense of control over ones life, expectations, resiliency, negative affect, and perceptions of and response to discrimination. Environmental and psychologic context then have influence over more proximal determinants of health, including health promoting or risk promoting behaviors; access to and quality of healthcare and health education; exposure to pathogens, toxins, and carcinogens; patho physiologic responses to stress; and the resources available to support optimal child development. Psychosocial Stress and Allostatic Load An understanding of allostatic load helps explain how psychosocial stress influences disease, health outcomes, and health disparities (Fig. 2.3 and Chapter 1). Allostasis refers to the normal physiologic changes that occur when individuals experience a stressful event, including acti vation of the stress response systems, changes in levels of inflamma tory and immune mediators, cardiovascular reactivity, and metabolic and hormone activation. These are normal and adaptive responses to Social Stratification Mechanism Raceethnicity Environment Physical Social Behaviors Health promoting Risk taking Support for child development Parents Childcare Schools Stress adversity Allostatic load Health care Access Quality Exposure to toxins, pollutants, pathogens, carcinogens Disparities in child health development SES, social class Residence pattern (e.g., urban rural) Context Psychology Differential AccessExposure Fig. 2.2 Child health disparities. SES, Socioeconomic status. (Data from Adler NE, Stewart J. Health disparities across the lifespan: Meaning, meth ods, and mechanisms. Ann NY Acad Sci. 2010;11861:523.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 10 Part I u The Field of Pediatrics stress and result in physiologic stability in the face of an external chal lenge. After
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an acute external stress or challenge, these systems revert to normal baseline states. However, when the stressor becomes chronic and unbuffered by social supports, dysregulation of these systems may occur, resulting in pathophysiologic alterations to these responses, such as hyperactiva tion of the allostatic systems, or burnout. Over time this dysregulation contributes to increased risk of disease and dysfunction. This patho physiologic response is called allostatic load. Allostatic load may contribute to increased incidence of chronic dis eases such as cardiovascular disease, stroke, diabetes, obesity, asthma, and depression. It is notable that these specific chronic diseases have increased prevalence in racial and ethnic minority groups because of long standing historical and current discrimination and oppression that have contributed to increased psychologic distress that in turn con tributes to allostatic load and the resultant disparities in these chronic diseases. Many of these conditions are noted to occur in adulthood, demonstrating the life course consequences of chronic psychosocial stress and adversity that begins in childhood. Figure 2.3 shows a model through which racism as a toxic psychosocial stressor gets under the skin to cause physiologic dysregulation (allostatic load), which over time leads to chronic illnesses that are known to have higher preva lence in minoritized populations (health disparities). The allostatic load model provides a pathophysiologic mechanism through which negative structural and social determinants of health contribute to health disparities. It complements other mechanisms noted in Figure 2.2, such as differential access to healthcare; increase in health risk behaviors; and increased exposure to pathogens, toxins, and other unhealthy agents. The Healthy Immigrant Paradox The Healthy Immigrant Paradox refers to the epidemiologic finding that first generation immigrants have better health than native born coun terparts regardless of age, sex, economic status, or ethnic category, but their health status declines and converges with the native born popula tion over time. Studies in the United States and Europe have found that most immigrants have better physical and psychologic health status than native born people of similar ethnicity in their receiving country. There are a variety of possible explanations for this health difference, including self selection bias among people who emigrate: being younger, more educated, and physically healthier than those in the country of origin who do not emigrate. In addition, immigrants may bring healthier cultural beliefs and practices that may contribute to better health out comes. However, the health status of immigrant populations declines in the decades after initial migration because of a variety of complex socio political and economic reasons, including denial of access to healthcare services (e.g., laws that prohibit immigrants from having access to preventive health services), having jobs with unsafe work conditions, adopting poorer health habits, and the psychologic stress of adapting to a new society (i.e., acculturation stress) (see Fig. 12.1). The Healthy Immigrant Paradox is not universal and has been called into question by some. Many studies of the Healthy Immigrant Para dox use self report of health status, which may be prone to bias. Not all first generation immigrants
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demonstrate better health than their U.S. born counterparts. Immigrant health status can be influenced by country of origin factors (e.g., war, famine), health beliefs (e.g., perceiving obesity to be a sign of wealth rather than of poor health), and racialized immigration policies in the receiving country that favor immigrants from some countries over others. Many studies of the Healthy Immigrant Paradox do not include temporary immigrant workers who often do not have the same access to resources as do longer term immigrants. Approximately 18.4 million, or 25 of children in the United States under age 12 years, have at least one immigrant parent. Children of immigrant parents have better health and academic outcomes com pared with their U.S. born counterparts. For example, Latinx and Asian children who are born to immigrant parents (second generation) and those brought to the United States as children (1.5 generation) have better study habits and better academic outcomes compared with third generation U.S. born Latinx and Asian American counterparts. Behavioral health outcomes also vary among immigrant children and their U.S. born counterparts, where third generation and subsequent generation children engage in more risky health behaviors. DISPARITIES IN CHILD HEALTH AND HEALTHCARE Tables 2.1 and 2.2 display some of the known disparities in child health and healthcare. Many health disparities may occur as a result of historical oppression and marginalization of people with policies targeting groups Processing of the social environment RACISM structural institutional interpersonal internalized Physiological disstress Psychological disstress Racial identity Socialization Perceived social status Coping responses resources Chronic maladaptation Conceptual model for how racism increases disease risk and health disparities Physiologic dysregulation (allostatic load) HPA dysregulation (cortisol) SMA dysregulation (CV reactivity; arterial elasticity) Altered inflammation (IL6; CRP) Health disparities Morbidity Mortality (e.g.,CVD, diabetes, obesity, depression, asthma) Hormonal regulation Altered immunity Epigenetic alteration Fig. 2.3 Mechanism through which racism leads to health disparities. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 2 u Child Health Disparities 11 Table 2.1 Child Health Disparities HEALTH INDICATOR RACEETHNICITY FAMILY INCOME RESIDENCE Child health status fair or poor Black and Hispanic White and Asian Poor Not Poor Children with special healthcare needs (CSHCN) Black White Hispanic Poor Not Poor One or more chronic health conditions Black White Hispanic Asian Poor Not Poor Asthma Mainland Puerto Rican Black White and Mexican American Poor Not Poor Urban Rural Obesity Hispanic and Black White and Asian Poor Not Poor Rural Urban Infant mortality Black Hispanic White Poor Not Poor Low birthweight (2,500 g) Black White, Hispanic, American Indian Native Alaskan, AsianPacific Islander Mainland Puerto Rican Mexican American Poor Not Poor Preterm birth (37 wk) Black American IndianNative Alaskan, Hispanic, White, AsianPacific Islander Mainland Puerto Rican Mexican American Poor Not Poor Seizure disorder, epilepsy Black White, Hispanic Poor Not Poor Bone, joint, or muscle problem White Black, Hispanic Poor Not Poor Ever breastfed White, Hispanic, Asian
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Black Not Poor Poor Urban Rural No physical activity in the past week Hispanic Black, Asian White Poor Not Poor Hearing problem Poor Not Poor Vision problem Poor Not Poor Oral health problems (including caries and untreated caries) Hispanic Black White, Asian Poor Not Poor Rural Urban Attention deficithyperactivity disorder (ADHD) White, Black Hispanic Poor Not Poor Rural Urban Have ADHD but not taking medication Hispanic, Black White Anxiety problems White Black, Hispanic Poor Not Poor Depression Poor Not Poor Rural Urban Behavior or conduct problem (ODD, conduct disorder) Black White, Hispanic Poor Not Poor Autism spectrum disorder White Black Hispanic Poor Not Poor Learning disability Black White, Hispanic Poor Not Poor Rural Urban Developmental delay Black White Hispanic, Asian Poor Not Poor Risk of developmental delay by parental concern Hispanic Black and White Poor Not Poor Speech or language problems Poor Not Poor Adolescent suicide attempts ( consider, attempt, needed medical attention for an attempt) Girls: Hispanic Black and White Boys: Hispanic and Black White Adolescent suicide rate Girls: American Indian White, AsianPacific Islander, Hispanic, Black Boys: American Indian and White Hispanic, Black, AsianPacific Islander Child maltreatment (reported) Black, American IndianAlaskan Native, Multiracial White, Hispanic, Asian, Pacific Islander Poor Not Poor Flourishing Asian American White Other Non Hispanic Black Hispanic Not Poor Poor AIDS (adolescents) Black Hispanic White AIDS, Acquired immunodeficiency syndrome; ODD, oppositional defiant disorder. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 12 Part I u The Field of Pediatrics that are deemed to be socially, politically, geographically, and economi cally inferior. As a result of these targeted policies, we tend to see health disparities of people based upon racialethnic group, socioeconomic status (often operationalized through family income, sometimes using insurance status as a proxy), and residency patterns, such as urban and rural locale. Other stratification factors, such as abilitydisability status, may also contribute to health and healthcare inequality Child Health Disparities Asthma Disparities in asthma prevalence are seen by racialethnic group and SES. According to the CDCs 2019 National Health Interview Survey (NHIS) data, the national mean prevalence of asthma among chil dren (18 years old) was 7.0. Compared with the mean, the children with the highest prevalence of asthma were Black (18.0), Indigenous NationAlaskan Native (17.8), and Hispanic (12.5). Asthma preva lence for Asian American children was 8.2. There are also significant regional and SES differences in asthma prevalence, with children who live below the federal poverty level having a 14.5 prevalence. Exposure to environmental pollutants is one factor explaining these disparities in asthma prevalence. Although non Hispanic White Ameri cans consume the most goods and services that produce greenhouse gases (e.g., fine particulate matter), Black and Hispanic Americans have higher exposure to greenhouse gases that are associated with poor health outcomes, including asthma. Residential hypersegregation results in higher exposure to air pollution and other respiratory toxins for Black
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and Hispanic Americans, increasing their risk of asthma. In addition, evidence shows a correlation between exposure to traffic pollutants and having fewer local pharmacies and healthcare providers. This triple jeopardy is more common with Black and Hispanic children. Obesity In 2018, the National Center for Health Statistics found that 19.3 of all U.S. children and adolescents (ages 6 17 years) have obesity (Fig. 2.4). Obesity prevalence was highest among Hispanic children (25.6) and non Hispanic Black children (24.2). The prevalence of obesity was 16.1 among non Hispanic White children and 8.7 among non Hispanic Asian children. The obesity prevalence among Indigenous NationAlaskan Native adolescents is 11.0 and among Native HawaiianPacific Islanders is 26.7. There are complex inter plays between social, environmental, and behavioral influences on health that contribute to obesity disparities in the United States. Studies have found that obesity prevalence is higher in communities with high rates of poverty and communities with a majority Black population because of lack of access to grocery stores and farmers markets (food deserts), overabundance of fast food restaurants, less access to parks and outdoor recreation areas, food marketing targeting, and higher healthy food prices. In addition, dietary patterns, access to nutri tious foods, and differing cultural norms regarding body habitus may account for some of these differences. Pregnancy Outcomes, Preterm Birth, and Infant Mortality The highest rates of infant mortality are seen in non Hispanic Black infants (Figs. 2.5 and 2.6). According to data from the CDC, the overall Table 2.2 Child Healthcare Disparities HEALTHCARE INDICATOR RACEETHNICITY FAMILY INCOME RESIDENCE Did not receive any type of medical care in past 12 mo Hispanic, Black, Asian White Poor Not Poor Rural Urban No well child checkup or preventive visit in past 12 mo Hispanic White and Black Poor Not Poor Rural Urban Delay in medical care Hispanic Black White Poor Not Poor Unmet need in healthcare due to cost Black Hispanic White Asian Poor Not Poor No coordinated, comprehensive, or ongoing care in a medical home Hispanic Black and Asian White Poor Not Poor Rural Urban Problem accessing specialist care when needed Hispanic and Black White Poor Not Poor No preventative dental care visit in past 12 mo Hispanic and Asian Black White Poor Not Poor Rural Urban No vision screening in past 2 yr Hispanic and Asian Black and White Poor Not Poor Did not receive needed mental health treatment or counseling in past 12 mo Black and Hispanic White Poor Not Poor Not receiving a physician recommendation for HPV vaccination among 13 to 17 yr old girls Black and Hispanic White Immunization rates: adolescent HPV vaccine Girls: white Black and Hispanic Boys: Black and Hispanic White HPV, Human papillomavirus. 100 50 40 30 20 10 0 P er ce nt 1999 2002 2003 2006 2007 2010 Total White, nonHispanic Asian, nonHispanic Mexican American Black, nonHispanic 2011 2014 2015 2018 Fig. 2.4 Percentage of children ages 6 17 with obesity by race and Hispanic origin, selected years 19992002 through 20152018. (From National Center
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for Health Statistics. National Health and Nutrition Ex amination Survey. https:www.childstats.govamericaschildrensurveys 2.aspnhnes.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 2 u Child Health Disparities 13 infant mortality rate was 5.7 infants per 1,000 live births. For Black infants, the mortality rate was 10.8 infants per 1,000 live births. The top 5 causes of mortality (in order of frequency) among Black infants were low birthweight, congenital malformations, maternal complications, sudden infant death syndrome (SIDS), and unintended injuries. Black American infant mortality remains high compared with other popula tions, regardless of maternal education, insurance status, maternal age, and income. Chronic experiences with structural, institutional, and interper sonal racism contribute to elevated biomarkers for stress and allostatic load, which is referred to as weatheringthe accumulative effect of adversity on the health of individuals (see Chapter 2.1). Weathering of Black women has been associated with a risk of preterm birth and infant mortality. When examining the life course perspective, studies suggest that early life exposure to adversity, including systemic racism, increases the risk of poor birth outcomes (see Chapter 2.1). Having a racially concordant physician significantly reduces the risk of infant mortality by 39 among Black newborns. Infant mortality rates among Indigenous NationAlaskan Native pop ulations was 8.2 infants per 1,000 live births, with the leading causes of infant death (in order of frequency) being low birthweight, congenital malformations, and maternal complications. Asian American infants had the lowest infant mortality rates, at 3.8 infants per 1,000 live births, with the leading causes of death (in order of frequency) being congeni tal malformations, low birthweight, maternal complications, and unin tended injuries. The Asian American population was not disaggregated by country of origin, so granular details regarding this heterogenous American population were not available. Overall Hispanic infant mor tality was 4.9 infants per 1,000 live births, but mortality rates varied sig nificantly based upon country of origin from 3.8 to 5.6 per 1,000 live births. Leading causes of death among all Hispanic infants (in order of frequency) were congenital malformations, low birthweight, maternal complications, SIDS, and unintended injuries. The White American infant mortality rate was 4.6 infants per 1,000 live births, with the lead ing causes of infant mortality (in order of frequency) being congenital malformations, low birthweight, SIDS, unintended injuries, and mater nal complications (see Chapters 114 and 114.1). Infant mortality among the Native HawaiianPacific Islander pop ulation was 9.4 infants per 1,000 live births overall. Infant mortality rates varied in the Native HawaiianPacific Islander population when the data were disaggregated by country of origin from 10.1 to 22.5 per 1,000 live births. In 2017, the World Health Organization (WHO), UNICEF, and United Nations (UN) highlighted some of the social and environmental risk factors for such high infant mortality among Pacific Islanders, which include prematurity, birth complications, and severe infections (specifically, pneumonia and diarrheal illnesses). Infant mortality
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among Native Hawaiians was 9.4 infants per 1,000 live births, and the leading causes of infant mortality were preterm birth and low birthweight, sudden unexplained infant death, congenital anomalies, infection, and injury. Many of the causes of infant mortality disparities can be mitigated through public policy, public health measures, and healthcare inter ventions that specifically target populations at highest risk, such as increased access to quality prenatal care, reducing air pollution expo sure, and improving physician training to reduce implicit bias and improve communication skills. Oral Health Significant differences exist in oral health status and in preventive oral healthcare according to raceethnicity, SES, and residency locale. The 20192020 National Survey of Childrens Health (NSCH) found the prevalence of oral health problems among children (ages 1 17 years) to be 17.7 for Hispanic Americans, 16.2 for Black Americans, 15.8 for Asian Americans, 12.1 for White Americans, and 13.2 for other non Hispanic Americans. The prevalence of oral health problems in this 2019 2020 NSCH were found to be highest among children who live in households with incomes below the federal poverty level (20.3) compared with children who live in households making 400 of the federal poverty level (8.7). 19 83 19 85 0 5 10 15 20 25 Infant deaths per 1,000 live births 19 90 19 95 20 00 20 14 20 10 Black, NH AIAN, NH Total Hispanic White, NH API, NH Fig. 2.5 Death rates among infants by race and Hispanic origin of mother, 19831991 and 19952014. AIAN, American Indian or Alaska Native; API, Asian or Pacific Islander; NH, non Hispanic. (From National Center for Health Statistics. National Vital Statistics System. https:w ww.childstats.govamericaschildrenhealthfig.asphealth2. Accessed July 2018.) To ta l W hit e, n on H isp an ic Blac k, no n Hisp an ic Am er ica n In dia n or Alas ka N at ive , n on H isp an ic Asia n or P ac ific Is lan de r, no n Hisp an ic 0 5 10 15 100 Percent 1990 2005 2015 Fig. 2.6 Percentage of infants born with low birthweight by race and Hispanic origin of mother, 1990, 2005, and 2015. (From National Cent er for Health Statistics. National Vital Statistics System. https:www.c hildstats.govamericaschildrenhealthfig.asphealth1b. Accessed July 2018.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 14 Part I u The Field of Pediatrics Data from the CDC demonstrated that overall prevalence of dental caries decreased for children age 6 11 years: from 21 in the 1994 2004 NHANES survey to 17 in the 20112016 survey. The children in the survey who did not show improvements in the prevalence of den tal caries were younger children (ages 6 8 years), poor children (both near poor and children living below the federal poverty level), and non Hispanic Black children. Preventive oral healthcare may improve rates of
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caries and treat caries before further impairment ensues. Data from the 2014 Medical Expenditure Panel Survey revealed that being poor and lacking health insurance were the main reasons for not receiving preventive dental care. Hearing Care No data suggest that the prevalence of hearing loss (either congenital or acquired) is different among racialethnic or SES categories, but fol low up care after diagnosis of a hearing problem has been shown to be poorer in certain groups. Delays in diagnosis and treatment of hearing loss are found among children who lack health insurance, live farther away from diagnostic health centers, are poor, live in areas with spe cialists shortages, live in rural areas, and have primary care providers with limited experience in caring for children with hearing loss. Much of this disparity is reduced when families have access to specialists. Vision Problems The parent reported 20192020 NSCH found that vision problems were reported in 3.1 of Hispanic children, 1.2 of White children, 2.1 of Black children, 1.0 of Asian children, and 1.6 of children in other racial categories. Vision problems were more commonly reported among children who lived in households with an income that was less than the federal poverty level (3.4) compared with children living in households with an income greater than 400 of the federal poverty level (0.8). Vision problems were more commonly reported among children who did not have a medical home (2.6) compared with children with a medical home (1.0). Reports of vision problems in children also varied by insurance coverage type, with 0.9 of chil dren with private health insurance, 3.0 of children with public health insurance, 3.0 of children with both public and private health insur ance, and 4.1 among uninsured children. Immunization Disparities in immunization rates had been noted with household income status, insurance status, and residential location. In response to these socioeconomic disparities and to higher rates of measles cases in the 1980s, a number of interventions were initiated, including the cre ation of the Vaccines for Children program (VFC), which eliminated the financial barrier to immunization by providing free immunizations to at risk groups (Medicaid eligible, uninsured, Indigenous Nation Alaskan Native, or underinsured and vaccinated at a federally quali fied health center or rural health clinic). Although vaccination rates have improved, the 20182020 CDC National Immunization Survey Child study found income, geographic, and racial disparities in infant vaccination rates. Vaccination rates were lower among infants living in households with an income below the federal poverty level and infants who lacked health insurance. Vaccination rates varied widely by state and region of the United States. Although rates of initial primary vaccine series demonstrate no or decreasing disparities, other vaccination rates do show differences. Black and Hispanic adolescent females have lower human papillomavi rus (HPV) vaccination rates than do Whites. Reasons for this disparity include parental concerns about safety and providers not recommend ing the vaccine. Of interest, Black and Hispanic male adolescents have higher rates of HPV vaccine coverage than do Whites. Adolescent
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Suicide In 2019, the CDC Youth Behavior Risk Surveillance System of 9th 12th graders reported suicide attempts by racial category, sex, and sexual ori entation. The highest rate of suicide attempts was among Indigenous NationsAlaskan Native teens (25.5), followed by Native Hawaiian Pacific Islanders (18.4), multiracial teens (12.9), Blacks (11.8), Latinx Americans (8.9), White Americans (7.9), and Asian Ameri cans (7.7). Suicide attempts were higher among adolescent females (11.0) than among adolescent males (6.6). Suicide attempts vary when stratified by sexual orientation status, with the highest prevalence among bisexual teens (24.5), followed by gay male teens (19.5) and heterosexual teens (6.4). Risk factors for suicide ideations and attempts include sexual assault, being bullied, substance abuse, depression, and experiences with interpersonal racial discrimination (see Chapter 40). Child Maltreatment In 2014, reports of child abuse and neglect were higher in Black (15.3 per 1,000 children), Indigenous NationAlaskan Native (13.41,000), and multiracial (10.61,000) children, compared with Hispanic (8.81,000), Pacific Islander (8.61,000), White (8.41,000), and Asian (1.71,000) chil dren. Poverty, measured at the family and at the community level, is also a significant risk factor for maltreatment. Counties with high poverty con centration had 3 times the rate of child abuse deaths than counties with the lowest concentration of poverty. Additionally, it is the criminaliza tion of poverty that increases the risk of poor people being reported for abuse and neglect compared to their more affluent counterparts. However, despite the fact that Black children are overrepresented in the child wel fare system in the United States, race itself should not be a marker for child abuse or neglect. Studies have found that Black parents are overreported for child abuse and maltreatment compared with White parents who engage in the same behavior because of historical systemic racism and implicit racial bias among those who report and caseworkers. Latinx childrens represen tation in the child welfare system varies by state and region, where they are overrepresented in some states, but underrepresented in other states. Indigenous NationAlaskan Native youth are underrepresented in the child welfare system in most states, but Alaska is the state with the highest overrepresentation of Indigenous children reported to the child welfare system. White American children are not overrepresented in the child welfare system and are often underrepresented. Behavioral Health Disparities Attention DeficitHyperactivity Disorder (ADHD) The 20192020 NSCH found the overall prevalence of ADHD among children age 3 17 years to be 8.9. White and Black children are more often diagnosed with ADHD (10.2 and 10.5, respectively) than are Hispanic children (6.9), Asian American children (2.7), and chil dren of other non Hispanic groups (8.5). Other studies have shown that both Black and Hispanic children have lower odds of having an ADHD diagnosis than White children. Children reared in homes with a household income below the federal poverty level are diagnosed more often (10.9) than those at or above the federal poverty level (8.3). Children with two or more adverse childhood experiences (ACEs) are almost 3 times as likely to be diagnosed with
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ADHD (17.1) compared with children with no ACEs (5.8). Children without a medical home are more likely to be diagnosed with ADHD (9.7) compared with children who have a medical home (8.0). Children diagnosed with ADHD have different treatment expe riences. After being diagnosed with ADHD, White children, when compared with Black and Hispanic children, were more likely to be diagnosed with a coexisting anxiety disorder. Within the first year of treatment for ADHD, White children were most likely to be treated with medication or behavior therapy and Asian American children were the least likely to receive any type of treatment for ADHD. Depression and Anxiety Disorders According to the 2020 National Survey of Drug Use and Health, from 2004 to 2019, the reported prevalence of major depression episodes increased among all U.S. adolescents. In 2019, those with the high est reported prevalence of a major depression episode were 16 to 17 year olds (20.2), adolescent girls (23.0), adolescents of two or more races (20.9), and teens living in households with incomes above the federal poverty level (16.1). When stratifying by racial group, a major depression episode was found in 17.3 of Hispanic teens, 15.9 of White teens, 15.1 of Asian American teens, 12.2 of Indigenous NationAlaska Native teens, and Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 2 u Child Health Disparities 15 11.4 of Black teens. Differences in reported rates of depression based upon racial group may be the result of differences in the manifestation of depression symptoms, clinician treatment bias, and limited access to adequate mental healthcare. Autism Spectrum Disorder (ASD) Compared with White children, Black and Hispanic children are less likely to be diagnosed with ASD, and when diagnosed, are typically diag nosed at a later age and with more severe symptoms. Nonetheless, Blacks and Hispanics are typically diagnosed at a later age and with more severe symptoms. Disparities in diagnosis and timing of diagnosis are concern ing given that early diagnosis provides access to therapeutic services that are most effective when initiated early. Reasons for these disparities may include differences in cultural behavioral norms, stigma, differences in parental knowledge of typical and atypical child development, poorer access to quality healthcare, and differences in the quality of provider patient communication along with trust in providers. Recent CDC data suggest that racial and ethnic disparities in ASD diagnosis are decreasing. Behavioral or Conduct Problems According to the 20112012 NSCH, Black children age 2 17 years have higher rates of oppositional defiant disorder (ODD) or conduct disorder than do White and Hispanic children. Evidence suggests that the overdiagnosis of Black children with these disorders is linked to the pervasive criminalization and adultification of Black child behavior. Adults often view Black children as older, less innocent, and in less need of protection than same age peers of other racial groups. In fact,
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studies have found that physicians with negative implicit racial bias are more likely to overpathologize Black child behavior and overdiagnose Black children with ODD, conduct disorder, and ADHD. The patholo gizing of Black child behavior can have severe consequences, including excessive school punishment, school expulsion, and early contact with the legal system. Developmental Delay The 20192020 NSCH found that Black children age 3 17 years had higher reported rates of developmental delay (7.4) than Hispanic chil dren (5.3), White children (5.4), and other non Hispanic children (5.4). Children living in households with incomes below the federal poverty level were more likely to be diagnosed with a developmental delay (8.7) than children living in households with an income at 400 of the federal poverty level (3.6). Children experiencing two or more ACEs have a higher prevalence of developmental delay than do children with no ACEs (10.8 vs 3.8). ACEs increase the childs allostatic load and impede neurologic development, thus placing them at increased risk of developmental delays. Evidence also suggests that physicians with negative implicit racial biases are less likely to ask Black parents and parents who speak English less fluently about their concerns regard ing developmental delays and are less likely to refer the children to early intervention, and these children are less likely to receive appropriate developmental evaluations by early intervention providers. Flourishing In the 20192020 NSCH, parents reported rates of flourishing, which is overall good mental health in their children and teens. Flourishing was measured by three behaviors: learning, resilience, and self regulation. Overall, 63.3 of parents reported their child met all three flourish ing criteria. Females (66.8) were reported as having higher flourish ing than males (59.9). The highest level of flourishing was reported among Asian American youth (73.0), followed by White (64.8), other non Hispanic children (62.1), Black (61.8), and Hispanic (59.7). Flourishing rates were lowest among youth who live in house holds with incomes lower than the federal poverty level (55.6) and highest among youth living in families with incomes higher than 400 of the federal poverty level (70.0). Child Healthcare Disparities In almost all areas, Black, Hispanic, and Indigenous NationAlaskan Native children have been identified as having worse access to needed healthcare, including receipt of any type of medical care within the past 12 months, well child or preventive visits, delay in care, having an unmet need because of healthcare cost, lack of care in a medical home, problems accessing specialist care when needed, lack of pre ventive dental care, vision screening, mental health counseling, and recommendations for adolescent immunizations (see Table 2.2). In addition, many of these healthcare indicators are found to be worse for children living in poverty and for those living in a rural area. Dispari ties in access to and quality of healthcare among children of color and poor children are linked to long standing structural barriers, systemic racist policies and practices, environmental policies, social and struc tural determinants of health, and healthcare provider negative implicit racial biases that influence
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healthcare delivery and patient physician communication and relationships. APPROACHES TO ERADICATING DISPARITIES: INTERVENTIONS An example of a successful intervention that closed the disparity gap is the implementation of the VFC program, which significantly decreased the disparity in immunization rates noted among racialethnic groups and poorunderinsured children. This is an example of a public health policy approach to intervention. Interventions need to occur at the clinical level as well. The almost universal use of electronic health records (EHRs) provides a unique opportunity for collecting vital clinical and demographic data that can be helpful in identifying disparities and monitoring the success of interventions. All EHR platforms should use a standardized approach to gathering information on patient raceethnicity, SES, primary lan guage preferences, and health literacy. The Institute of Medicines 2009 report Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement provides best practices information about capturing these data in the health record. The advancing science of clinical quality improvement can also provide a framework for identifying clinical strategies to reduce dis parities in care. Use of PDSA (Plan Do Study Act) cycles targeting specific clinical issues where health disparities exist can result in prac tice transformation and help reduce differential outcomes. Another practice level intervention that has the potential to reduce disparities in care and outcomes is the medical home model, provid ing care that is accessible, family centered, continuous, comprehensive, compassionate, coordinated, and culturally effective. The use of care coordinators and using community based health navigators are effec tive tools in helping to break down the multiple social and health sys tem barriers that contribute to disparities. Community engagement is an essential requirement for lessening health and healthcare inequities. Health systems, practices, provid ers, public health, researchers, and payers need to include community voice and representation in all aspects of quality improvement, data interpretation, program design and development, and dissemination. To do less would be working on people instead of working with peo ple. To use a phrase from the disability advocacy community: Nothing about us without us. Many potential interventions seem appropriate and demonstrate efficacy under ideal circumstances. However, if the intervention does not address the concerns of the end userspatients and communitiesor fit the social or cultural context, it will likely be ineffective in the real world. Only by involving the community from the beginning, including defining the issues and problems, can the like lihood of success be optimized. At the provider level, there are opportunities for training in implicit bias and communication skills, as discussed in Chapter 2.1. Shared decision making has been found to improve physician patient rela tionships and health outcomes. Another strategy to address cognitive biases in physician clinical decision making is to identify heuristic and other cognitive errors (see Tables 5.3 5.5) and use the diagnos tic time out (see Table 5.6) when a diagnosis does not fit the clinical presentation. Population health strategies have the advantage of address ing the determinants of disparities at both the clinic and commu nity levels.
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Techniques such as hotspotting, cold casing (finding Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 16 Part I u The Field of Pediatrics patients and families lost to follow up and not receiving care), and geocoding; collaborating with communities and community based organizations; and periodic community health needs assessments identify the structural, systemic, environmental, and social factors that contribute to disparities and help guide interventions that are tailored to the local setting. Health disparities are a consequence of social and structural deter minants of health that often have developed based on historically rac ist policies and other practices and traditions that led to the social stratification mechanisms inherent in many modern societies. Health disparities mirror other societal disparities in education, policing, employment opportunities, and living conditions. While society grap ples with the broader issues contributing to disparities, healthcare and public health can work to understand the multiple causes of these dis parities and develop interventions that address the structural, clinical, and social root causes of these inequities. Visit Elsevier eBooks at eBooks.Health.Elsevier.com for Bibliography. 2.1 Racism and Child Health Mary T. Bassett, Zinzi D. Bailey, and Aletha Maybank RACISM AS A SOCIAL DETERMINANT OF HEALTH AND HEALTH INEQUITIES An emerging body of evidence supports the role of racism in a range of adverse physical, behavioral, developmental, and mental health out comes. Racialethnic inequity in health outcomes in the United States is long standing, apparent from the first collection of vital statistics in the colonial period. However, the extensive data that document racial disparities have not settled the question of why groups of people, par ticularly of African and Indigenous Nations peoples ancestry, face increased odds of shorter lives and poorer health (see Tables 2.1, 2.2, and 2.3). The role of societal factors is well recognized in determining population health, but often omits racism among social determinants of health. This oversight occurs in the face of a long history of racial and ethnic subjugation in the United States that has been justified both explicitly and implicitly by racism. From the early 18th century, colonial America established racial categories that enshrined White supremacy, conferring rights specifically on White men, while deny ing these rights to others. This racial designation was social and not based on genetics. Similar, perhaps less explicit, discrimination has continued through the centuries and remains a primary contributor to racialethnic inequities in childrens health. Current lifelong exposure to interpersonal, structural, and institutional racial discrimination and subordination has a significant impact on Black health outcomes. For generations, racialethnic disparities have been documented beginning at birth and extending across life. In 2018, life expectancy at birth for Blacks was almost 4 years shorter than life expectancy of non Hispanic Whites, influenced heavily by disparities starting at birth (Table 2.3). The infant mortality rate (IMR), arguably the most important measure of national health, has shown a
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persistent Black White gap despite a substantial decline in U.S. IMR for all racialeth nic groups (see Fig. 2.5). NCHS data in 2022 showed a double digit IMR only among non Hispanic Blacks, with 10.38 deaths per 1,000 live births, compared to 4.41,000 for non Hispanic Whites. A troubling stagnation in IMR, with no recent decline, is found among Alaska Natives and Indigenous Nations peoples. The 2022 IMR among non Hispanic Indigenous Nation peoples or Alaskan Native individuals, 7.68 deaths1,000 live births, has remained essentially unchanged for almost 2 decades. Exposures that affect infant survival occur before birth. Much of the maternal and child health literature emphasizes a higher preva lence of maternal obesity, diabetes, and substancealcohol use before conception among Black women as individualized risk factors leading to disparities in birth outcomes (Chapter 114.1). A California study of maternal obesity found that 22.3 of pregnant Black women and 20.3 of Latina women had a body mass index (BMI) of 30 40, com pared with 14.9 of White and 5.6 of Asian women. BMI 40 was more than twice as prevalent in Black (5.7) than in White (2.6) women. Further, in a nationally representative study of over 7 million singleton live births from the 2016 and 2017 U.S. National Vital Sta tistics System, although maternal prepregnancy obesity was associated with the risk of preterm birth in the general population, risk varied by maternal age and raceethnicity. Maternal obesity among non Hispanic Black women was inversely associated with risk of preterm birth among those younger than 30 years, but positively associated among those age 30 and older. Similar relationships were shown for non Hispanic White and Hispanic women. Although individual risk factors such as obesity contribute to differences in birth and health out comes, individual risk factors alone do not sufficiently explain these differences. Further, a focus on individual risk factors may contribute to a narrative that places blame on the individual without acknowledg ing the structural and social conditions of patients lives influencing the prevalence of these risk factors. Proximal factors such as maternal obesity do not capture the root causes of early childhood health inequi ties, social determinants of health, which present intervention points for achieving health equity. Achieving health equity requires examining equity in outcomes and also equity in process. Causes and interventions to address health ineq uities can be conceptualized as occurring upstream, downstream, or somewhere in between (Fig. 2.7). Downstream determinants occur on individual levels, including individual biology and specific risk factors and behaviors. In Figure 2.7, measures of health and health inequities, like life expectancy, IMR, maternal obesity, and maternal age, are at the far right and are considered downstream factors. Clinical inter ventions focused on downstream factors may help individuals, but do not address factors upstream that drive inequities in population health outcomes. These upstream factors include the physical, social, work, and service environments in which people are born, grow, live, work, and age that lead to downstream outcomes. If a child lives in
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public housing that is systematically underresourced to eliminate common pests, that child is more likely to encounter asthma triggers, experience asthma attacks, and require emergency department care or hospitalization. Interven tions could include remediating one apartment or home or increasing access to insurance; however, this is not getting at systematic mecha nisms by which public housing becomes a social determinant of health. Moreover, these interventions do not address the reasons that families need public housing in the first place or why these living conditions are more prevalent among certain communities compared with others. The distribution of these living conditions is patterned by institu tional inequities in the public and private sectors and in our laws and regulations, which represent a wider set of forces and systems shap ing the conditions of daily life. Social inequities, like racism, sexism, classism, heterosexism, and ableism, represent upstream social deter minants of health that affect access to resources and healthy living con ditions and are inequitably distributed across preexisting hierarchies of power. Resource allocation for public housing and the absence of universal access to a living wage might drive the living conditions within public housing. Focusing solely on downstream results of larger inequitable structures seldom yields sustainable change and ignores the roots of health inequities while tending to blame individuals structur ally constrained by centuries of inequitable systems. Prenatal maternal exposures to pesticides, lead, and other envi ronmental toxins vary by race. This inequitable distribution is largely driven by racist policies and practices affecting exposures to small and large scale environmental hazards (see Chapter 2). The effects of per sistent racism are stressful and toxic to the body, with the experience of discrimination across leading to biologic changes that persist the life span, especially for pregnant women and their children. Thus racism is an essential social determinant of racialethnic inequities in mater nal and child health. Racism can increase cortisol levels and lead to a cascade of effects, including impaired cell function, altered fat metabo lism, increased blood glucose and blood pressure, and decreased bone formation (see Chapter 1 and Fig. 2.3). This can affect a growing fetus, Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 2 u Child Health Disparities 17 Table 2.3 New Social and Health Inequities in the United States TOTAL WHITE NON HISPANIC ASIAN HISPANIC OR LATINO BLACK NON HISPANIC NATIVE AMERICAN OR ALASKA NATIVE Wealth: median household assets (2019) 118,200 187,300 206,400 31,700 14,100 NR Poverty: proportion living below poverty level, all ages (2019) 12.3 9.0 9.7 17.2 21.2 24.2 Poverty: proportion living below poverty level, children 18 yr (2019) 16.0 10.0 9.0 for Asians only; 18.0 for Pacific Islanders 23.0 30.0 30.0 Unemployment rate (2021) 5.2 4.6 4.7 6.2 8.4 NR Incarceration: male inmates per 100,000 (2010) 733 450 115 for Asians only; 1,017 for Native Hawaiians and other Pacific Islanders
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831 2,306 1,291 Proportion with no health insurance, age 65 yr (2018) 11.0 7.8 7.4 20.1 12.1 28.6 Infant mortality per 1,000 live births (2018) 5.7 4.6 3.9 for Asians only; 9.4 for Native Hawaiian and other Pacific Islander 4.9 10.8 8.2 Preterm Birth: proportion of singleton births before 37 wk gestation (2018) 8.2 7.2 7.1 8.4 11.9 10.2 Maternal mortality, deaths per 100,000 live births (2018) 17.4 14.9 NR 11.8 37.3 NR Proportion of children 18 yr reporting current asthma (2018) 7.5 5.6 3.6 8.0 14.3 NR Self assessed health status (age adjusted): proportion with fair or poor health (2018) 9.0 7.6 8.2 12.3 13.5 18.6 Potential life lost: person years per 100,000 before age 75 yr (2016) 7,431.7 7,021.0 3,176.8 4,926.0 10,505.2 7,360.2 Proportion reporting serious psychologic distress in past 30 days, age 18 yr, age adjusted (20152016) 3.6 3.7 2.1 3.7 3.6 9.2 Life expectancy at birth (2018), yr 78.7 78.6 NR 81.8 74.7 NR Diabetes related mortality: age adjusted mortality per 100,000 (2018) 21.4 18.9 15.4 for Asians only; 48.1 for Native Hawaiians and other Pacific Islander 24.6 39.3 32.1 Mortality related to heart disease: age adjusted mortality per 100,000 (2018) 163.6 168.1 82.0 for Asian alone; 161.4 for Native Hawaiian and other Pacific Islander 112.3 212.0 109.6 Economic data and data on self reported health and psychologic distress are for Asians only; all other health data reported combine Asians and Pacific Islanders, unless otherwise noted. Wealth, poverty, and potential life lost before age 75 yr are reported for the Black population only; all other data are for the Black non Hispanic population. Serious psychologic distress in the past 30 days among adults 18 yr and older is measured using the Kessler 6 scale (range: 0 24; serious psychologic distress 13). NR, Not reported. Sources: Wealth data taken from the U.S. Census; poverty data for adults taken from the Kaiser Family Foundation, and poverty data for children taken from the National Center for Education Statistics; unemployment data taken from the U.S. Bureau of Labor Statistics; incarceration data taken from the Prison Policy Initiative using U.S. Census Bureau data; data on uninsured individuals, infant mortality, self assessed health status, potential life lost, serious psychologic distress, current asthma, preterm birth, life expectancy, diabetes related mortality, and mortality related to heart disease taken from the National Center for Health Statistics. leading to increased infant cortisol levels, lower birthweight (LBW), and prematurity. In New York City, White women had lower rates of adverse birth outcomes: 1.3 had preeclampsia, less than half the rate for Black women (2.9). Although infant deaths occur more frequently among low income groups of all racesethnicities, these birth outcome disparities by raceethnicity are found also in Blacks with higher SES. College educated Black women are more likely than White high schooledu cated women to have a LBW infant, a principal risk factor for infant death. Another study examined California birth certificates of preg nant Arab American women after the September 11, 2001, terrorist attacks and found
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that those who experienced discrimination imme diately after the 911 attacks had a higher relative risk of giving birth to an LBW infant in the following 6 months than seen in births before this date. A similar association between exposures to discrimination based violence and Latina mothers giving birth to LBW infants was found after the largest federal immigration incident in U.S. history in Postville, Iowa, with infants having a 24 greater risk at being LBW Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 18 Part I u The Field of Pediatrics at birth. These findings reinforce the critical role the physician has in explicitly asking families about potential exposures to racialized stressors and trauma. The increased risk of disease for populations of color continues from infancy into childhood (see Table 2.1); racialethnic dispari ties are seen across almost all health indicators, with most relative gaps remaining stagnant or worsening over the past two decades. Compared with White children, Black children are about twice as likely to be diagnosed with asthma, more likely to be hospitalized for its treatment, and more likely to have fatal attacks. The Black White disparity in asthma has grown steadily over time. Indigenous Nations children and youth (19 years) also experience negative health outcomes, with the highest rates of unintentional injury and mortality rates at least twice as high as for other racialethnic groups. Additionally, according to a 2017 NCHS brief, Latino youth age 2 19 have the highest rates of obesity in the 2000 CDC sex age specific growth charts. The NCHS data show that 25.8 of Latino (followed by Black) children qualified as obese from 2015 to 2016. Black children are more likely to be exposed to witnessed, personal, or family violence (an example of an adverse childhood experi ence), and exposure to these stressful life experiences is associated with academic, behavioral, and health problems. Notably, children with more stressful life experiences have a higher likelihood of experiencing ear infections, acute respiratory infections, obesity, eczema, viral infections, and teen pregnancy. EXPLAINING RACIAL DISPARITIES: A TAXONOMY OF RACISM Explanations of these ubiquitous racial gaps have focused on indi vidual factors, including variation in individual genetic constitu tion, behavioral risks, poverty, and access to (and use of) healthcare services. Scientists agree that race is a social construct that is not based on biology, despite the persistence of the idea that racial cat egories reflect a racially distinctive genetic makeup that has a bearing on health. In fact, the genetic variation between individuals within a particular racialethnic group is far greater than the variability between races. Further, biologic ancestry is distinct and separate from the social construct of race. Despite the genetic data, many groups have been racialized over time. Notably, the U.S. Census Bureaus demographic classifications reflect this process. In the mid to late 1800s the census counted mulattos,
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those of White and Black ancestry, as another race. Starting in the late 19th century, Eastern European immigrants and Jews were considered different races. As early as 1961, the U.S. Census identified Mexicans and Puerto Ricans as White even as racial classification varied by geography. All states collected birth records by 1919, but there was little uniformity on how race was col lected, if at all, across states. It was not until 1989, when the National Center for Health Statistics (NCHS) recommended assigning infant race as that of the mother and that standard guidance and categories were issued for states on collecting racial data at birth. Existing categories were changed and continue to change based on the economic, cultural, or political utility of the time, rather than actual genetic distinction. Defining Racism Racism has consistently structured U.S. society and is based on White supremacy, a hierarchical idea that Whites, the dominant group, are intrinsically superior to other groups who are not classi fied as White No single definition of racism exists, but one useful description is racial prejudice backed by power and resources. This conceptualization asserts that not only must there be prejudice but Strategic partnerships Advocacy Community capacity building Community organizing Civic engagement POLICY Living Conditions (Social Drivers) Root Causes Inequities (Systems of Power) Institutional Power (Structural Drivers) Individual health education Clinical care Risk Behaviors Disease Injury Mortality Physical Environment Land use Transportation Housing Residential segregation Exposure to toxins Economic Environment Employment Income Retail businesses Occupational hazards Historical and intergenerational trauma White supremacy Racism Classism Sexism Homophobia Ableism Xenophobia Smoking Poor nutrition Low physical activity Violence Alcohol and other drugs Sexual behavior Communicable disease Chronic disease Injury (intentional and unintentional) Weathering leading to increased morbidity Infant mortality Life expectancy Weathering results in early mortality Social Environment Experience of class, racism, gender, immigration Violence Culture: ads, media Service Environment Health care Education Social services UPSTREAM (Prevention orientation) Public Health and Health Care Practice (Treatment orientation) DOWNSTREAM refers to the dominant approach of treating individuallevel factors andor contributors without wholly addressing structural, societal, and community factors. Upstream refers to acknowledging and addressing the structural, societal, community and individuallevel factors that influence health. Whereas downstream Adapted from: Bay Area Regional Health Inequities Initiative (BARHII) Framework Corporations and businesses Government agencies Schools Laws, policies, and regulations Notforprofit organizations Fig. 2.7 What creates health framework. (From American Medical Association. Organizational Strategic Plan to Embed Racial Justice and Advance Health Equity, 20212023; adapted from the Bay Area Regional Health Inequities Initiative BARHII Framework.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 2 u Child Health Disparities 19 also an interlocking system of institutions to produce and reproduce inequities in access to and use of resources and decision making power. Even when considering variations in health behavior, life styles, economic status, and healthcare use, individual level behav ioral factors
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do not capture how broader shared social experiences shape outcomes. Racial domination or racism contributes to varia tion in the populations access to resources and exposure to disease and to the group experience of fair treatment and opportunity. Although many groups in the United States may encounter discrim ination based on raceethnicity, most of the modest literature on health effects of racism has focused on people of African descent, leaving a need to better understand the impact of racism on people of color. Table 2.4 and Figure 2.3 describe various pathways through which racism affects health. Although the empirical data on disparities for non Black popula tions of color deserve greater research, useful frameworks exist to understand the disparities that public health has documented to date. A useful taxonomy of how racism operates in society has four catego ries: internalized racism, interpersonal racism, institutional racism, and structural racism. Each is relevant in considering the impact of racism on child health. Internalized Racism When the larger society characterizes marginalized racialized groups as inferior, these negative assessments may be accepted by members of those groups themselves, either consciously or uncon sciously. The result is devaluation of personal abilities and intrinsic worth, in addition to the capacity, of others also classified as being a part of a marginalized racialized group. The best known docu mentation of internalized racism comes from the study of Kenneth and Mamie Clark known as the doll experiment, conducted in the 1940s. Black children, both males and females, were asked to choose between a Black doll and a White doll according to attributes described by the interviewer. In response to positive attributes (e.g., pretty, good, smart), most children chose the White doll. The Clarks interpreted this finding to mean that Black children had internal ized the societal views of Black inferiority and White superiority, even at the expense of their personal self image. Repeated by a New York City high school student several decades later, the findings were much the same, with 15 of 21 children endorsing positive attri butes to light skinned dolls. Multiple studies confirm that racial identity is established in young children, both Black and White, along with negative views of blackness. Developmentally, however, youth of color often explore racial identity earlier than their White counterparts. In terms of health outcomes, depending on perceived inferiority or superiority of the group, racial identification is associ ated with self esteem, mastery, and depressive symptoms. Low self esteem is independently implicated in mental health disorders and may contribute to the phenomenon of stereotype threat, in which personal expectation of underperformance correlates with prevailing social stereotypes and adversely affects actual performance. Interpersonal Racism How racial beliefs affect interactions between individuals has been the most studied aspect of racism. Interpersonal racism refers to situations where one person from societys privileged racial group acts in a discriminatory manner that adversely affects another per son or group of people. Such actions may be based on explicit beliefs or on implicit beliefs of which
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the perpetrating individual is not consciously aware. The experience of unfair and prejudicial treat ment has biologic consequences, reflected in measurable increases in stress responses. Such effects of interpersonal racism are best documented for mental health, where perceived unfair treatment serves as psycho social stressors, and are less robust for physical health outcomes. A 2021 study of 10,354 U.S. children age 10 and 11 years found only 2.8 of Whites, 5.4 of Latinos, 6.2 of Asian and Pacific Islanders, 6.5 of Indigenous Nations peoples, and 10 of Blacks self reported enduring racial discrimination. Furthermore, dis criminatory experiences have been strongly and consistently linked to greater risk for anxiety, depression, conduct disorder, psycho logic distress, ADHD, ODD, low self esteem or self worth, and challenges to psychologic adaptation and adjustment (see Chap ter 2). Perceived racial discrimination can affect behavioral, men tal, and physical health outcomes and is associated with increased alcohol and drug use among Indigenous Nations peoples (age 9 16 years), increased tobacco smoking for Black youth (11 19 years), higher depressive symptoms among Puerto Rican children, and insulin resistance among young females. Understanding the enduring impact of childhood experience on adult health has increased with the study of ACEs (see Chapter 1). ACEs have well documented cumulative negative health effects that occur across the life span and are patterned by raceethnicity. Early experience of racism is a proxy measure for toxic stress. The ques tion, Was childs name ever treated or judged unfairly because of their race or ethnic group? is included in the U.S. Census Bureaus NSCH, a random sample of over 90,000 households to assess the Table 2.4 Pathways Between Racism and Health and Examples Economic injustice and social deprivation Residential, educational, and occupational segregation to lower quality neighborhoods, schools, and jobs (both historical de jure discrimination and contemporary de facto discrimination) Lower salary for same work Lower promotion rate despite comparable evaluations Environmental and occupational health inequities Placement of bus garages and toxic waste sites Selective government failure to prevent lead in drinking water (per Flint, Michigan, 20152016) Disproportionate exposure of workers of color to occupational hazards Psychosocial trauma Interpersonal racial discrimination, including microaggressions Exposure to racist media, including social media Targeted marketing of health harming substances Legal: cigarettes; sugar sweetened beverages Illegal: heroin; illicit opioids Inadequate healthcare Inadequate access to health insurance and healthcare facilities Inadequate treatment caused by implicit or explicit racial bias State sanctioned violence and alienation from property and traditional lands Police violence Forced urban renewal (use of eminent domain to force relocation of urban communities of color) Genocide and forced removal of Native Americans Political exclusion Voter restrictions (e.g., for ex felons, ID requirements) Maladaptive coping behaviors Increased tobacco and alcohol consumption Stereotype threat Stigma of inferiority leading to physiologic arousal Impaired patient provider relationship Small, often unintentional racial slightsinsults (e.g., a judge asking a Black defense attorney, Can you wait outside until your attorney gets here?) From Bailey ZD, Krieger N, Agnor M, et al. Structural racism and health
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inequities in the USA: Evidence and interventions. Lancet. 2017;389:14531463. Panel 2. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 20 Part I u The Field of Pediatrics health of children up to 17 years old. Children of color from low income households, especially Latino children, were reported to have the lowest level of health. However, higher SES did not pro tect children exposed to racism from experiencing relatively poorer health. Children exposed to racism were also more likely (by 3.2) to have a diagnosis of ADHD and were 2 times more likely to expe rience anxiety and depression. Toxic stress increases cortisol levels in the body, increasing the risk of chronic disease. One study revealed that adolescents who reported average or high levels of perceived discrimination experienced exag gerated cortisol output in response to negative affect, whereas those reporting low levels of perceived discrimination did not experience significant reactivity to negative affect, after controlling for other stressors. Adolescents who experience racism with no support have been shown to have higher levels of blood pressure and obesity than those with emotional support, which can be protective. Medical practice has not been exempted from occurrences of interpersonal racism. Using variation in adherence to established clinical standards in diagnostic and treatment decisions across racialized groups, researchers have been assessing interpersonal racism in physician patient interactions. The most comprehensive review of such bias in clinical care remains the study by the U.S. Institute of Medicine, in which the discriminatory treatment was inferred from examination of clinical decision making rather than from directly observed interactions. For virtually every condition studied, Black patients were less likely to receive recommended care. Such racial bias has been most extensively established in adults but also extends to children. A study conducted in an emergency department found pediatric patients (21 years) were less likely to receive medically indicated pain medication if they were Black, mirroring the historical misconception of reduced pain sensitivity among Blacks. Within this context, it is unsurprising that perceived interpersonal racism has been linked to healthcare use, includ ing delays in seeking care or filling prescriptions and distrust of the health system. When Black patients receive concordant care from Black healthcare providers, their communications, health outcomes, and care are improved when compared with care from White providers. Perceived and experienced discrimination can be measured by at least six instruments (scales). Questions such as Are you treated with less respect or courtesy than other people, Do people act as if they are afraid of you, Do people act as if they think you are not smart, and Do you receive poorer service than other people, can be quantified with responses that range from Almost everyday to Never. High scores have been associated with preterm birth (see Chapter 114.1) Institutional Racism Interpersonal racism clearly inflicts harms, but even if completely eliminated, racial inequities
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would persist because of institutional and structural racism. Broadly, institutional racism refers to patterns of discrimination based on policy, culture, or practice and carried out by state and nonstate institutions (e.g., corporations, universi ties, legal systems, cultural institutions) within various sectors (e.g., housing, education, criminal justice). Key to current residential segregation are banking practices dating to the post Depression era. As an institution, the education system has been another tragic case of how racism affects childrens health. In addition, mass incarcera tion by the criminal justice system has dramatically increased in the United States while remaining relatively flat in other developed countries (Fig. 2.8). Over a lifetime, approximately 30 of Black men have been imprisoned. In school, children of color can experience not only individual racism but also institutional racism, as documented by higher rates of disciplinary actions such as suspensions, and at younger ages than White children. According to a 2016 U.S. Department of Edu cation civil rights survey, Black children, who represent only 19 of national preschool students, account for a staggering 47 of out of school suspensions. Black preschoolers are 3.6 times more likely to be suspended than their White peers. Black females, representing 20 of the female preschool population, account for 54 of out of school suspensions. Many schools have a zero tolerance policy for childhood behaviors, which criminalizes minor school infractions. Unfortunately, this disparity persists as children continue through the school system: for kindergarten to grade 12 (K 12) students, Black children are 3.8 times more likely to face out of school suspension than White peers. This inequity is particularly harmful because the educational system feeds into the criminal jus tice system (school to prison pipeline). Black students are 2.2 times more likely to have either school related arrests or law enforcement referrals than their White peers. The U.S. Department of Education survey also reveals racial inequities among children with disabili ties. For K 12 children with disabilities covered under the Individu als with Disability Education Act, 21 of multiracial females were issued at least one out of school suspension, compared with 5 of White females. Racial disparities in school discipline for minor infractions, dis ruptive behavior, or disobedience is linked to the concept of adulti fication. In this harmful, often unrecognized racial bias and social stereotype, adults and especially police view Black children (as young as 510 year) as older, less innocent, and more culpable than White students of the same age. Black male children are perceived as older, bigger, and more physically threatening than White peers. Black female children are viewed with similar characteristics plus a perception that Black female youth need less nurturing or protection, are more inde pendent, and less innocent. In addition to the threat to educational and employment prospects, school suspensions also affect childrens health. A 2016 brief from the Yale Child Study Center states that early suspensions and expulsions of children harm behavioral and social emotional development, weaken ing a childs overall development. Furthermore, these forms of punish
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ment may prevent the treatment of underlying health issues, such as mental health issues or disabilities, and cause increased stress for the entire family. 1980 1990 2000 Year USA 1980 1990 2000 Year UK 1980 1990 2000 Year Switzerland 1980 800 600 400 200 1990 2000 Year In ca rc er at io n pe r 1 00 00 0 Sweden 0 Fig. 2.8 Trends in incarceration prevalence in developed democracies, 19812007. (Adapted from Wilderman C, Wang EA. Mass incarceration, public health, and widening inequality in the USA. Lancet. 2017;389:14641472, Fig 1.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 2 u Child Health Disparities 21 Institutional racism can function without apparent individual involvement and has powerful repercussions that persist centuries later. Both medical professional organizations and educational institu tions have legacies of racial discrimination rooted in scientific racism. In 2008 the American Medical Association (AMA) issued a formal apology for its long history, dating to the 1870s, of endorsing explicitly racist practices, including exclusion of Black physicians, silence on civil rights, and refusal to make any public statement on federally sponsored hospital segregation. In 2020, the American Academy of Pediatrics (AAP) board of directors published an acknowledgement and apol ogy, Truth, Reconciliation, and Transformation: Continuing on the Path for Equity, for the institutionalized racist and exclusionary treatment of two Black physicians, Drs. Alonzo deGrate Smith and Roland Boyd Scott, dating back to 1939 and spanning until 1945 when they were finally admitted to the AAP as the first Black members. Exclusion from medical associations also meant exclusion from gaining privileges to work at the majority of hospitals. Despite a focus on medical school desegregation in the 1960s and 1970s, the presence of Black students in medical schools is actually declining. Low enrollment has become especially critical for Black men, who in 2014 accounted for about 500 of the 20,000 medical students nationwide. If physicians hold stereo typed views about race that affect their clinical decision making, the declining diversity of medical student bodies may well have conse quences for the quality of medical care. This history of institutional racism on people of color contributes to the mistrust, apprehension, and fear projected toward the entire medical establishment. Structural Racism The institutional racism within medical institutions reinforces insti tutional racism in other sectors, creating a larger system of discrimi nation, structural racism. Structural racism can be described as the totality of ways in which societies foster racial discrimination via mutu ally reinforcing systems of housing, education, employment, earnings, benefits, credit, media, healthcare, and criminal justice. These patterns and practices in turn reinforce discriminatory beliefs, values, and dis tribution of resources, which together affect risk of adverse health out comes. Institutional racism and structural racism are sometimes used interchangeably, but structural racism refers to overarching patterns beyond a single institution, or even a collection of
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institutions. Histori cally, government policies and practices have been largely responsible for the creation of these structures. De facto and de jure urban residential segregation serves as a case study for how the mechanisms of structural racism operate across mul tiple sectors and can affect child health and development across the life course. As described in Chapter 2 urban residential racial segregation was reinforced by the practice of redlining initiated by the U.S. Fed eral Housing Administration in 1934. This now illegal (but still covert) practice demarcated urban neighborhoods to be made ineligible for home loans based primarily on the racial composition of the neigh borhood. Thus Black neighborhoods were excluded from the feder ally financed, post Depression home ownership boom and remained segregated. Through this segregation, existing resources were system atically removed (disinvestment) and led to further impoverished com munities of color. The effects of residential segregation were not restricted to the bank ing or housing sectors. Residential segregation ties together multiple systems, driving childrens access to and quality of healthcare, educa tion, and justice, as follows: Residential segregation and the healthcare system. Healthcare insti tutions were explicitly racially segregated by law and inequitably resourced until passage of the 1964 Civil Rights Act. Vestiges of this segregation continue in hospital level segregation and racial com position by hospital. In addition, institutions that provide mainly for uninsured or underserved residents are often financially unsta ble, leading to higher risk of closure in disinvested neighborhoods of color. On the provider level, fewer primary care and specialty physicians practice in disinvested, segregated neighborhoods, and those who are present are less likely to participate in Medicaid. Residential segregation and the education system. Schools have a similar history of racial segregation and, after a brief respite of inte gration peaking in 1980, the level of segregation now resembles pre civil rights levels. School segregation is related to high risk health behaviors. Within these schools and in their neighborhoods, Black children experience disproportionate penalization and criminaliza tion in the educational and criminal justice systems, reinforcing in stitutional racism in other sectors and other forms of racism. A low income Black child is much more likely than a low income White child to live in a segregated neighborhood. The result is that the Black child will face not only the cumulative disadvantage in both family and neighborhood resources and experiences over time but also the initiation of chains of disadvantage during sensitive periods of childhood key for development and adult transition (e.g., early childhood, adolescence). Residential segregation and the criminal justice system. Incarceration is concentrated in overpoliced and criminalized Black communities. In the NCHS, almost 13 of Black children had a parent impris oned during their childhood (to age 17 years), compared with about 6 of White children. Parental incarcerationwhich may start with a traumatic arrest in the home and later disrupt caregiving, create social stigma, deepen financial disadvantage, disconnect parents emotionally from children, and disrupt childrens psychologic de velopmenthas been independently associated with a higher
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risk of childrens antisocial behavior. Most notably, experiences directly related to institutional and struc tural racism, operating through residential segregation (including financial hardship, parental imprisonment, and neighborhood vio lence), result in higher levels of ACEs for Blacks and Latinos than for Whites. There has been growing, consistent evidence of the lifelong association between ACEs and a range of negative physical and mental health outcomes across the life course. Structural racism, shown here with the example of residential seg regation, affects child health through various direct and indirect, over lapping pathways, including the concentration of dilapidated housing, inferior quality of the social and built environment, exposure to pol lutants and toxins, limited access to high quality primary and second ary education, few well paying jobs, overpolicing and criminalization, adverse experiences, and limited access to quality healthcare. OPPORTUNITIES TO ADDRESS RACISM Racism as a determinant of health has strong empirical support, and there is promising evidence for community wide approaches to its mit igation. Less is known about effective interventions in clinical settings. Most medical schools and subsequent training will not have prepared practitioners to examine the role of racism in their patients lives or clinical care settings. Nonetheless, it is reasonable to expect that pedia tricians can help address racism and promote racial justice in at least three ways: during individual patient encounters and at their practice sites, as members of institutions that provide medical care and training, and as respected community members. Clinical Settings A first step in understanding that racism affects everyone is personally assessing implicit bias. Such biases reflect reflexive patterns of think ing, often using racial stereotypes stemming from living in a racially stratified society. The Project Implicit Race Implicit Association Test (https:implicit.harvard.eduimplicittakeatest.html) is available online, and its results are confidential. The purpose of such tests is to create awareness, not apportion blame. Nonetheless, results are usu ally jarring for all participants, no matter their racial identity, many of whom will uncover negative racial biases of which they were unaware. Such individual assessments may contribute to addressing interper sonal racism as it triggers self reflection. Further, a growing number of organizations offer training in understanding common behaviors associated with implicit bias, including microaggressions (see later) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 22 Part I u The Field of Pediatrics and inequitable hiring practices. Recognizing and undoing personal biases as pediatricians requires training to challenge existing thought processes and actions that are often difficult to see. Seeing and undoing personal biases are lifelong endeavors, and progress should be tracked over time. Pediatricians and other health workers have an entrusted role in families that requires a partnership. Recognizing the strengths of families and valuing their lived experiences of internalized and inter personal racism as expertise fosters a more collaborative clinical inter action and relationship. This expertise cannot be readily captured by
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pedagogy or acquired by a pediatrician in training or clinical practice. Such an approach emphasizes respect for the expertise that caregiv ers bring to raising their child and begins with the presumption that caregivers want to do what is best for the child. By doing this, physi cians can form a collaborative relationship, rather than one based on racial stereotypes and blame. Cultural competence is a widespread concept, recognizing that other cultures exist that the dominant culture must learn to decode. In contrast, the concept of cultural humility, for which training is increasingly available, considers equality among cultures and a partnership approach to differences. During clinical encounters with children and families, healthcare workers can use their authority to acknowledge racism. Although there is still a gap in evidence on how, when, and what, pediatricians can consider having The Talk with their patients who are Black, young adolescent, and male. The Talk is the conversation that Black parents typically initiate with their children regarding interactions with police. In doing so, the pediatrician affirms the need for such conversations to promote safety and may provide opportunities to connect families to community resources. For all young children and youth of color, pediatricians should ask patients if they have they been treated unfairly because of their race, recognizing this can be a form of bullying. The experience of racism at all levels can be traumatic. Trauma consists of experiences or situations that are emotionally painful and distressing and that overwhelm peoples ability to cope, leaving them powerless. Pediatricians must consider adopting trauma informed care practices that shift the paradigm from, What is wrong with you? to What has happened to you? In addition, healthcare providers must strive for structural com petency, which is the trained ability to discern how a host of issues defined clinically as symptoms, attitudes, or diseases also represent the downstream implications of a number of upstream decisions, accord ing to Johnathan M. Metzl and Helena Hansen. Consequently, it is helpful to ensure that clinical practices are aware of other social ser vices that may enhance health and engagement with clinical care, such as a need for legal counsel to address substandard housing, counter landlord harassment, or negotiate threatened evictions (http:medical legalpartnership.org), or the support of literacy by prescribing or distributing childrens books in order to encourage parents to read to children (http:www.reachoutandread.org). Institutional Settings The healthcare institution more broadly is also a setting where racial dynamics occur. Introducing conversations about race may uncover experiences that would not otherwise be apparent. A common out come of implicit racial bias is microaggressions, actions and attitudes that may seem trivial or unimportant to the perpetrators but create a cumulative burden for those who perceive them. A physician of color might be asked for identification on entering a hospital, whereas White colleagues are not so queried. These microaggressions occur in interac tions among staff and with patients and may contribute to an unspoken and uncomfortable racial climate. Although such interactions rarely would violate federal
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discrimination standards, interaction between coworkers shapes an entire practice and can be perceived by families. Encouraging institutions to assess the impact of race among patients and staff is a first step. Healthcare delivery institutional set tings can use both data and patient accounts to examine racial effects in the practice and experience by routinely disaggregating assessment measures by raceethnicity. Patient reported satisfaction or quality of care might be disaggregated by race. In addition, it is important to consider racial equity within the practices employment structure: Are there discrepancies in hiring, retention, and salaries by race? Are there proper supervision and grievance procedures, particularly around issues related to racial microaggressions? Also, consider the images and language used to discuss and represent both patients and staff, par ticularly when alluding to raceethnicity. Organizations such as Race Forward (https:www.raceforward.org) and organizational assessment tools developed by the Race Matters Institute can help guide institu tional assessments and internal change processes. Several local health departments have already incorporated antiracism training into staff professional development and introduced internal reforms to drive orga nizational change. Because institutional reform is closely associated with other models of productive practices, including quality improvement, collective impact, community engagement, and community mobiliza tion, application of an antiracism lens should be judged by its contribu tions to organizational effectiveness and on its moral merits. Education or training institutions have a special role in ensuring a workforce that is both diverse and informed. Patterns of student admis sions should be scrutinized, as should the curriculum. The recruitment of Black healthcare workers will enhance the benefits of racially con cordant care between Black providers and patients. Although many medical schools now include diversity training and provide instruction on cultural competency, such instruction is often brief (and sometimes delivered online). By contrast, approaches based on structural competency, cultural humility (see Chapter 12), and cultural safety have been implemented in health profession als training in such countries as Canada and New Zealand. These approaches emphasize the value of gaining knowledge about struc tural racism, internalized scripts of racial superiority and inferiority, and the cultural and power contexts of health professionals and their patients or clients. Health professionals benefit from the scholarship of diverse disciplines about the origins and perpetuation of, and rem edies to counter, racism. Finding class time for these topics encounters a biomedical bias that is widespread in medical education, although arguably successful medical practice also requires a host of skills in addition to a firm grounding in pathophysiology and recommended treatments. Racism results in damaging disparities that cause ill health and shorten lives, which justifies the teaching hours committed to its understanding. Pediatricians as Advocates for Antiracist Practices and Systems Physicians are respected members of communities and wield the power, privilege, and responsibility for dismantling structural racism. A conceptual review of structural racism highlights the promise of place based interventions that target geographically defined commu nities, to engage residents and a range of institutions (across sectors) in order to ensure equitable access to resources
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and services, remediating the processes set in motion decades earlier. Clinicians play a role in advocating with the halls of medicine in linking patients to services, programming, and other resources and advocating for responsiveness in addressing gaps. Over time, concentrated efforts across sectors in targeted areas have shown improvement in a host of social outcomes, including health outcomes. Similarly, providing access to higher quality housing, either with housing vouchers or housing lotteries, had unexpected positive health impacts. These findings are encouraging, as are the social policy interventions and systemic change, including legislation such as the Civil Rights Act, the advent of Medicare and Medicaid, and tenement regulations, associated with the narrowing of racial gaps. Visit Elsevier eBooks at eBooks.Health.Elsevier.com for Bibliography. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 3 u Global Child Health 23 GLOBAL BURDEN AND TRENDS IN CHILD HEALTH The under 5 mortality rate (U5MR), also known as the child mor tality rate, serves as a reliable gauge of child well being. It measures the outcome of a countrys health system and reflects a nations social and economic development. The global U5MR fell by 61 between the years 1990 and 2020. Despite these gains, in 2019 an estimated 5.3 million children under 5 years of age died worldwide, which is equivalent to 37.1 deaths per 1,000 live births, or nearly 13,700 child deaths each day. The burden of the worlds child mor tality disproportionately falls upon low and middle income popu lations of Africa and Asia (Fig. 3.1), with 82 of all child deaths in the world occurring in just two regions: sub Saharan Africa (55) and South Asia (27), compared to the less than 1 of child deaths occurring in high income countries (HICs). Consequently, a child born in sub Saharan Africa is over 15 times more likely to die by age 5 years compared to a child born in an HIC. Improvements in child mortality have been uneven globally, regionally, and nationally. Significant disparities in child mortal ity persist and are concentrated in specific regions of Africa and Asia. The countries with the highest child mortality gap between the richest and the poorest in 2019 were Nigeria, Guinea, and the Central African Republic. In Nigeria in 2019 while the national rate of child mortality was 117 deaths per 1,000 live births, at the sub national level, the rates ranged from 58 to 261 deaths per 1,000 live births. Although the number of child deaths has decreased dramatically over the past 3 decades, the early years of life remain one of a childs most vulnerable periods. Among the under 5 child deaths, nearly half occurred within their first month of life (2.4 million deaths in 2019). This estimate of neonatal deaths (1 month of age) trans lates into 17.9 per 1,000 live births. Declines in neonatal mortality occurred at
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slower rates, so that in 2019 the neonatal deaths made up 48 of all under 5 deaths (Fig. 3.2). Neonatal deaths account for a smaller percentage of child mor tality in low and middle income countries (LMICs) compared to HICs (Fig. 3.3), but the absolute risk of death remains significantly higher. A child in sub Saharan Africa or in Southern Asia is nine times more likely to die in the first month of life than a child born in an HIC. An estimated 2 million stillborn deaths (28 completed weeks gestation) burden families worldwide every year, which correlates to 13.9 deaths per 1,000 births. This translates into a stillborn baby Chapter 3 Global Child Health Suzinne Pak Gorstein, Ruth W. Nduati, Sansanee S. Craig, and Susan Wamithi Underfive mortality rate (deaths per 1,000 live births) 100 75 to 100 50 to 75 25 to 50 10 to 25 10 No data Fig. 3.1 Under 5 mortality rate (probability of dying by age 5 per 1,000 live births) by country, 2019. Note: The classification is based on unrounded numbers. This map does not reflect a position by UN IGME agencies on the legal status of any country or territory or the delimitation of any fron tiers. (From United Nations Inter agency Group for Child Mortality Estimation UN IGME. Levels Trends in Child Mortality: Report 2020, Estimates developed by the United Nations Inter agency Group for Child Mortality Estimation. New York: United Nations Childrens Fund, 2020. https:www. un.orgdevelopmentdesapdsiteswww.un.org.development.desa.pdfilesunpd2020levels and trends in child mortality igme .pdf.) 1990 D ea th s (in m ill io ns ) 1995 2000 2005 2010 Underfive child deaths Infant deaths Neonatal deaths Stillbirth deaths 2015 2019 8.9 7.5 6.9 5.9 5.1 4.5 4 12.7 11 9.8 8.3 7 5.9 55.1 4.3 3.9 3 2.8 3.4 3.4 2.6 2.7 2.4 2.6 2 Fig. 3.2 Deaths for under 5 children, infants, neonates, and stillbirths between 1990 and 2019. (Data from United Nations Inter agency Group for Child Mortality Estimation UN IGME 2020; Stillbirth estimates for 1995 and 2009 from Cousens 2011 2010 rate is from 2009; year 2000 rates from Lawn 2012, and 2015 rate of 2.6 million is from Blencowe 2016.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 24 Part I u The Field of Pediatrics for every 72 births, or one every 16 seconds. These figures are likely an underestimate because stillbirths are underreported, reflecting the low prioritization of this vulnerable age group. Before 2006, no organization published global, regional, or country specific stillbirth rates. Progress to reduce stillbirths has been slow, with the annual rate of reduction estimated to be half that for neona tal deaths between 2000 and 2019. Almost all stillbirths occur in LMICs (98), with three quarters in sub Saharan Africa and South Asia. Most childhood deaths are caused by conditions that could be prevented or
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managed through improved access to simple, low cost interventions. The most common causes of child death are pre term birth complications, intrapartum related events, pneumonia, and diarrhea (Fig. 3.4). Of all under 5 child deaths, 2.61 million were the result of infectious diseases and 21.7 of all child deaths were vaccine preventable. Neonatal disorders accounted for an estimated 46 of the deaths in children younger than the age of 5 years. In contrast, child deaths from infections in developed coun tries are less common, where injuries and congenital malformations account for higher proportions of under 5 deaths. Undernutrition, including fetal growth restriction, stunting and wasting, and micro nutrient deficiencies, contributes up to 45 of under 5 deaths and poor childhood development in LMICs. Undernutrition has an enormous impact on child mortality because of the vicious cycle between nutrition and infection whereby lowered immunity and mucosal damage from inadequate dietary intake lead to increased susceptibility to pathogen invasion, while recurrent illnesses impair the childs appetite and ability to absorb adequate calories and nutri ents. In addition, undernutrition early in life can have long lasting consequences, including impaired cognitive ability and reduced school and work performance. Infants who start out life with a low birthweight are at high risk of death, contributing 6080 of all neonatal deaths. Most of these High income Central Europe, Eastern Europe, Central Asia Latin America and Caribbean Southeast Asia, East Asia, Oceania North Africa and Middle East South Asia SubSaharan Africa 74.1 27.9 40.5 26.9 24.4 12.2 14.8 7.23 19 9.56 11.5 5.9 4.9 2.8 0 10 20 30 40 50 60 70 80 Under 5 death rate per 1,000 live births Neonatal death rate per 1,000 live births Fig. 3.3 Under 5 child and neonatal death rates per 1,000 live births, 2019. (Data from GBD 2019 Under 5 Mortality Collaborators. Global, regional, and national progress towards Sustainable Development Goal 3.2 for neonatal and child health: All cause and cause specific mortal ity findings from the Global Burden of Disease Study 2019. Lancet. 2021;398:870905.) Neonatal 28 days and older 0 025 050 075 100 0 025 050 075 100 Global High SDI Highmiddle SDI Middle SDI Lowmiddle SDI Low SDI Western SubSaharan Africa Western Europe Tropical Latin America Southern SubSaharan Africa Southern Latin America Southeast Asia South Asia Oceania North Africa and Middle East Highincome North America Highincome Asia Pacific Eastern SubSaharan Africa Eastern Europe East Asia Central SubSaharan Africa Central Latin America Central Europe Central Asia Caribbean Australasia Andean Latin America Proportion of deaths (causefraction) Proportion of deaths (causefraction) Neoplasms Transport injuries Digestive diseases Cardiovascular diseases Sudden infant death syndrome Selfharm and interpersonal violence Haemoglobinopathies and haemolytic anaemias Neurologic disorders Endocrine, metabolic, blood, and immune disorders Diabetes and kidney diseases Chronic respiratory diseases Urinary diseases and male infertility Skin and subcutaneous diseases Substance use disorders Maternal and neonatal disorders Respiratory infections and tuberculosis Enteric infections Congenital birth defects Neglected tropical diseases and malaria Other infectious diseases Unintentional injuries HIVAIDS and sexually transmitted infections Nutritional deficiencies Fig.
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3.4 Neonatal and remaining under 5 cause specific mortality by region and SDI. Values presented are cause fractions: the proportion of total age specific deaths with a particular underlying cause of death. Causes are presented at Level 2 in the hierarchy, with other noncommunicable dis eases disaggregated to include congenital birth defects, sudden infant death syndrome, hemoglobinopathies and hemolytic anemias, endocrine, metabolic, blood, and immune disorders, and urinary diseases and male infertility separately. Total under 5 mortality is split at 28 days to include neonatal (28 days) separately from children between 28 days and 5 years of age. SDI, Sociodemographic Index. (From GBD 2019 Under 5 Mortal ity Collaborators. Global, regional, and national progress towards Sustainable Development Goal 3.2 for neonatal and child health: All cause and cause specific mortality findings from the Global Burden of Disease Study 2019. Lancet 2021;398:870905. Fig. 3, p. 887.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 3 u Global Child Health 25 infants are premature (born before 37 weeks of pregnancy) or suf fered from fetal growth restriction. About half of stillbirths take place during labor, ranging from 10 in developed regions to 59.3 in South Asia, which reflects the role that timely, high quality care around delivery can play to prevent many deaths. Mortality among older children age 5 14 is low compared with the younger cohort, although 1 million children in this age group died in 2016, which is equivalent to 3,000 children dying every day. Infectious diseases play a smaller role in deaths among these older children, with injuries from causes such as drowning and road traffic trauma account ing for more than a quarter of the deaths and noncommunicable dis eases for about another quarter. Child health should not be assessed based on mortality rates alone. Children surviving illness are often left with lifelong disabilities, burdening their families and affecting their economic productivity. Approximately 1 in 10 children are born with or acquire a disability, and 80 of these disabled children live in LMICs. Neonatal disor ders, infectious diseases, protein energy and micronutrient deficien cies, hemoglobinopathies, and injuries are leading causes of disability in children. Child deaths can also lead to disability in the surviving mother. For example, a woman who has a stillbirth is at risk of an obstetric fistula or death, with an estimated 7898 of women with obstetric fistula having had a stillbirth. Also, perinatal loss and child death is a psychologic trauma. Stillbirth, neonatal death, and child loss can lead to posttraumatic stress disorder, depression, anxiety, guilt, and in some settings shame and social stigma, particularly in the mother, with significant impact on the health and well being of the family. Adolescents age 10 19 years who have benefited from the gains in child survival grow up to find themselves in social settings where less attention and fewer
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resources are devoted to their well being compared to their earlier years of growth. The paucity of support during this time of transition into adulthood diminishes the impact that child survival can have on their lives. Adolescents made up 18 of the worlds population, approximately 1.8 billion individuals, in 2010, and the adolescent population is expected to increase to over 2 billion in the year 2050. The vast majority of adolescents, 88, live in LMICs. In 2050, sub Saharan Africa is projected to have more adolescents than any other region. Although adolescent mortality rates are far lower than their younger age cohorts, in low income countries adolescents face a lack of educational and employment opportunities and increased risk of injuries and violence, HIV and AIDS, mental health problems, adolescent marriage, and teenage pregnancypreventing them from attaining their potential as they transition into adulthood. The decade of adolescence is a critical period when poverty and inequity frequently transfer to the next generation. The intergenerational transmission of poverty is most apparent among undereducated adolescent females. In many parts of the world poor teenage females are likely to be married early, risk ing premature childbearing, higher rates of maternal mortality, and contributing to infant and child undernutrition. THE SOCIAL DETERMINANTS OF CHILD HEALTH AND THE COVID 19 PANDEMIC The gross national income level accounts for much of the differences in child mortality rates observed between countries; however, other sig nificant factors affect child health. For example, although the wealth of the United States places it in the 7th position with respect to gross domestic product (GDP) per capita (2022) in the world, the U.S. child mortality rate is ranked 47th in the world, at 6.5 deaths out of 1,000 live births, which is higher than Cuba (5.1), Canada (4.9), the UK (4.3), the Czech Republic (3.2), and Japan (2.5). In addition, national estimates of mortality mask differences in health status among subpopulations within the same country. In Burkina Faso, the child mortality rate is 43.7 per 1,000 live births among children born to mothers with no education, whereas it is 16.7 per 1,000 among children born to mothers with at least secondary education. Similarly, in 2016 the child mortality rate in Bolivia was 18.6 per 1,000 live births for children in the highest wealth quintile, whereas it was 55.1 per 1,000 for children living in the lowest quintile. Child health is influenced by socioeconomic factors that operate at multiple levels of society. Disparities in these socioeconomic fac tors translate into child health inequities as reflected by high rates of disease, poor nutrition, and disability. The immediate, underlying, and basic structural determinants of disease, malnutrition, and dis ability are outlined in Figure 3.5. Preventive and curative medical interventions focus on the immediate causes of poor health; how ever, inequities in child mortality and morbidity will persist unless the basic and underlying determinants of health are addressed. Socioeconomic and Political Roots of Disparities in Global Health The root influences on a childs health often lie
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in the economic and political environments in which the child is born (see Figs. 3.4 and 3.5). Growth of economies during the first half of the 20th century was associated with dramatic health improvements, with falling mortality rates and rising life expectancy across all regions. However, the second half of the 20th century was characterized by growing disparities in global economies and health between and within many countries. According to the World Inequality Report (http:wir2018.wid.world) between 1980 and 2016 the rich est 1 of the world reaped twice as much of the worlds income as the poorest 50 of the world (27 of income growth compared with 12). Although almost all countries report population level income inequalities, a few such as the United States have seen income disparities at historical proportions. For example, since 1980 the bottom half of Americans captured only 3 of the total growth. Growing income inequalities translate into greater differ ences in health outcomes, such as life expectancy, between the rich and poor in the United States (Fig. 3.6). More aggressive redistribu tion of wealth through taxes and transfers, labor protections, and POLITICALINSTITUTIONAL ENVIRONMENT BASIC CAUSES UNDERLYING CAUSES IMMEDIATE CAUSES FAMILYCOMMUNITY RESOURCES Political environment Social Organizational Economic Structure (National,Provincial,Local) Income Food Assets Dwelling Health care Inadequate care of children Household food insecurity Disease exposure Inadequate Dietary Intake Injury Unhealthy household environment Lack of health services Undernutrition Disease Disability Maternal education Safe water Sanitation Fig. 3.5 Socioecologic model Basic, underlying, and immediate determinants of child health. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 26 Part I u The Field of Pediatrics universal access to education and health care contribute to Europes significantly lower levels of income disparities. Evidence supports the notion that inequalities are not just a human rights issue, but are detrimental to economic growth. Wealthier households spend a smaller percentage of their own income, thereby dampening demand and slowing down econo mies. Poorer households face greater challenges to invest in health and educational opportunities, translating into less human capital and obstacles to be productive and contribute to the economy. In extreme cases, inequalities can threaten social unrest, which further undermines economic activity. Global disparities have grown between many wealthy and low income countries, in large part because of austerity measures, includ ing structural adjustment programs, imposed on many postcolonial countries by the International Monetary Fund (IMF) and World Bank. To receive loans and pay off their debt, many of these countries were required to take on austerity measures that transformed their economies to produce cash crops and export natural resources to HICs, rather than supporting local industries and investing in human capital and social services. The focus on cash economies rather than health and social service systems limited their ability to provide services to their growing poor population and further hindered responses to the spread of communicable diseases
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such as HIVAIDS and the growing prevalence of noncommunicable diseases. The COVID 19 Pandemic The emergence of the severe acute respiratory syndrome coronavirus 2 (SARS CoV 2) leading to the global pandemic of coronavirus disease 2019 (COVID 19) resulted in over 6 million deaths from COVID 19 and over 499 million cases of COVID 19 infection in the world (see Chapter 311). Children and adolescents tend to experience less severe illness and fewer deaths from SARS CoV 2 compared to adults, which may lead to lower rates of testing among children and contribute to transmission. Childhood COVID 19 infections have not affected countries equally, with early evidence showing pediatric deaths from COVID 19 to be significantly greater in LMICs compared to HICs. One study estimated 2.77 pediatric deaths1 million children in LMICs compared to 1.32 million children in HICs and higher rates of death among infants 1 year of age, at 0.07, in HICs versus 1.30 in LMICs. Although some LMICs settings are protected from COVID 19 infection by having a younger demographic profile, lower prevalence of the chronic condi tions predisposing to severe infection, and less international transport especially in remote, low income regions, they also suffer from limited personal protective equipment, poor ventilation of indoor spaces, and inequitable distribution of COVID 19 vaccines. Marginalized groups in these nations who are infected face inadequate medical support and supplies, which can greatly elevate their risk of death and disability. Furthermore, poor availability of testing leads to a large number of deaths and infections being underreported. The pandemic has significantly strained the already weak health and public health systems in LMICs, raising grave concerns about the risk for youth with chronic conditions. COVID 19 impact has led to disruptions in routine childhood vaccinations, lack of medical sup plies, shortages of a health workforce, and reduced delivery of lifesav ing services such as cardiac surgery. One estimate showed that 90 of countries report disruptions in essential health services such as essen tial medicines, routine childhood immunizations, and diagnostics, although some mitigation efforts are in place. COVID 19 and Social Determinants of Health COVID 19 affects child and adolescent health indirectly through the rippling effects on the worlds economies and disruption of national systems in public health, healthcare, food, and education, all which are feared to be more of a threat than the pandemic itself (Fig. 3.7). 1930 Q1 77 Q1Q2 77 Q2Q3 78 Q3Q4 80 Q4Q5 82 76 78 83 88 89 Q5 1960 70 E xp ec te d ag e at d ea th ( ye ar s) Birth cohort 75 80 85 90 Fig. 3.6 Projected life expectancy for U.S. men at age 50 for 1930 and 1960 birth cohorts by income quintile Q1 (poorest) to Q5 (richest). (From Bor J, Cohen GH, Galea S. Population health in an era of rising income inequality: USA, 19802015, Lancet. 2017;389:14751490, Fig. 5b; with data from National Academies of Sciences, Engineering, and Medicine. The Growing Gap in Life Expectancy by Income: Implications
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for Federal Programs and Policy Responses. Washington, DC: National Academies Press;2015.) Indirect impact: Social determinants of health and adverse childhood events Overall health impact Excess mortality and morbidity COVID19 pandemic impact on child health Impact over time Increased inequities Undernutrition Infections Direct impact of COVID disease COVID19 mortality Long COVIDdisabilities Unemployment, poverty Increased children living in poverty Crime, violence Reduced girl education and empowerment Child abuse, neglect Mental health crisis anxiety, depression decreased resilience Opportunity to mitigate impact Mortality and morbidity Unstable housing Disrupted education, increase in teen pregnancies Caregiver COVID19 deaths Food insecurity Disruptedweakened health services Fig. 3.7 Direct and indirect effects of the COVID 19 pandemic on child and adolescent health over time. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 3 u Global Child Health 27 The economic crisis precipitated by the COVID pandemic lock down and supply chain disruptions places the greatest strain on low income communities, increasing the proportion of children who live in extreme poverty and face housing instability. An estimated additional 100 million children are estimated to have fallen into extreme poverty worldwide, which is the first increase in this indicator in 20 years. Pre existing disparities have widened during the pandemic both within countries and globally between LMICs and HICs. The COVID pandemic has stressed the social fabric of communi ties around the world so that the most marginalized and vulnerable bear the brunt of its full impact. Many racial and ethnic minority groups are unequally affected by COVID 19, with significantly higher rates of illness and death from COVID 19. Vulnerable communities that existed before the pandemic living in poverty, those employed in the informal sectors (e.g., street vendors), living within close proximity to others, unable to afford being able to stay safe at home, lacking protective gear at work, and without access to healthcare and health insurance are all at greater risk for COVID 19 infections. Children in LMICs are particularly vulnerable because of the pro longed shutdown of schools, resulting in loss of education without access to technologic online solutions to engage in the educational curriculum. The loss of safe school environments has also been attributed to further widening gender inequities, and several countries reported a surge in adolescent pregnancies, domestic violence, and child abuse after closures. Furthermore, the number of children affected by COVID 19asso ciated orphanhood and caregiver death has been estimated to have increased by 90. The loss of a mother is associated with increased child mortality, especially when maternal death occurs in the first year of the childs life. In regions where rates of maternal death were already high, the impact of COVID 19 leading to loss of a mother or another caregiver can have devastating impact on the lives of children in the short and long term. An epidemic of poor mental health has followed the COVID
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19 pan demic for parents and their children; as the pandemic has progressed, the prevalence of depression and anxiety symptoms among adolescents has escalated. The impact on mental health is not surprising because of the extraordinary disruption of routines, recreation, family income, peer interaction, and school support. The pandemic further halted mental health services in 93 of countries worldwide as the demand for mental health services increased in settings where online mental health services are not an option. Sustainable Development Goals The prioritization and planning of global development and interna tional aid has been guided by international goals. In 2015, world lead ers agreed to 17 goals, the Sustainability Development Goals (SDGs), to improve global well being by 2030 (Fig. 3.8). The SDGs were built on the eight Millennium Development Goals (MDGs), which were concrete, specific, and measurable targets set by the United Nations in 2000 to eradicate poverty, hunger, illiteracy, and disease by 2015. The SDGs have become even more critical to countries planning for ways to mitigate the future impact of the COVID 19 pandemic on child health, particularly among marginalized communities and LMICs. The SDGs highlight recommended interventions for coun tries to meet their goals in the setting of the challenges created by the COVID 19 pandemic such as optimizing digital centers to increase access to public services, with an emphasis on targeting solutions for communities with low internet connectivity. There have been setbacks in progress towards meeting the 17 SDGs because of the COVID pandemic, highlighting the need to prioritize programs such as routine immunization services, malaria bed net distribution, fam ily planning, and antenatal care services to prevent further negative impacts on child health. Fig. 3.8 Sustainable development goals. (Courtesy United Nations Department of Public Information, 2016. United Nations Sustainable Develop ment Goals website: https:www.un.orgsustainabledevelopment. The content of this publication has not been approved by the United Nations and does not reflect the views of the United Nations or its officials or Member States.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 28 Part I u The Field of Pediatrics SDG 3 is to ensure healthy lives and promote well being for all at all ages. It includes health related subtargets, including to reduce U5MR to 25 deaths per 1,000 live births and neonatal mortality rate to 12 deaths per 1,000 live births by 2030. The other 16 SDGs focus mainly on social and economic determinants and the environment. This reflects an important shift to broaden the global targets to include upstream deter minants of health, including health systems, and socioeconomic, gender based, political, and environmental factors. As a social movement to support sustainable development, the SDGs were founded on the recog nition that the worlds environment, economic and social development, and human health are interconnected and dependent. The SDGs were formulated with core principles and values for economic
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development, environmental sustainability, and social inclusion for all. The Global Strategy for Womens, Childrens and Adolescents Health 20162030 maps out the strategies to achieve the SDGs by cen tering on the goal of health for all women, children, and adolescents using evidence based approaches, backed by innovative and sustain able financing mechanisms. An important component of the Global Strategy is the inclusion of adolescents as central to the 2030 Agenda for Sustainable Development. In alignment with the SDGs, the Global Strategy focuses on three pillars of action: (1) ending preventable deaths among women, children, and adolescents, (2) ensuring their health and well being by ending malnutrition and ensuring access to family planning, reducing exposure to pollution, and achieving uni versal health coverage, and (3) expanding enabling environments by efforts such as eradicating extreme poverty, ensuring good quality education, eliminating violence against females, enhancing research and technologic capabilities, and encouraging innovation. In addition to being much broader in scope, the Global Strategy focuses on equity in that the strategy is meant to apply to all people, including the marginalized and difficult to reach populations, in all situations, including during crisis. Health insurance coverage would not be assessed based simply on the national average of coverage but also by how well the increases in coverage benefit all population groups regardless of income or educational level. EVIDENCE BASED INTERVENTIONS AND INNOVATIONS TO ADDRESS CHILD HEALTH INEQUITIES Estimates suggest that most of the 5.6 million annual deaths in chil dren younger than 5 could be averted by increasing implementa tion of proven low cost interventions (Table 3.1). Childhood deaths from diarrheal illness and pneumonia can be prevented by simple Table 3.1 Essential Interventions Across the Continuum of Care to Improve Child Survival HEALTH AND MULTISECTOR ACTIONS Ensuring food security for the family (or mother and child) Maternal education Safe drinking water and sanitation Handwashing with soap Reduced household air pollution Health education in schools AGE SPECIFIC ACTIONS PREVENTION TREATMENT Adolescence and Pre Pregnancy Family planning Preconception care Pregnancy Appropriate care for normal and high risk pregnancies (maternal tetanus vaccination) Antenatal steroids for premature births Intermittent preventive treatment for malaria Childbirth Maternal intrapartum care and monitoring Skilled delivery Thermal care for all newborns Clean cord and skin care Early initiation and exclusive breastfeeding within the first hour Newborn resuscitation (e.g., Healthy Babies Breathe) Premature: Surfactant administration, continuous positive airway pressure (CPAP), treatment of jaundice, feeding support for small preterm infants Kangaroo mother care Postnatal Period Appropriate postnatal visits Extra care for small and sick babies (kangaroo mother care, treatment of infection, support for feeding, and management of respiratory complications) Antibiotics for newborns at risk and for treatment of bacterial infections (PROM, sepsis, meningitis, pneumonia) Infancy and Childhood Exclusive breastfeeding for 6 mo and continued breastfeeding up to at least 2 yr with appropriate complementary feeding from 6 mo Monitoring and care for child growth and development Routine immunization for childhood diseases Micronutrient supplementation, including vitamin A, from 6 mo Prevention of childhood diseases Malaria (insecticide
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treated bed nets) Pneumonia Diarrhea (rotavirus immunization) Meningitis (meningococcalHibpneumococcal vaccine) Measles (vaccine) Prevention of mother to child transmission Case management of severe acute malnutrition Management of childhood diseases Malaria (antimalarials) Pneumonia (case management, antibiotics) Diarrhea (ORS, zinc supplement, continued feeding) Meningitis (case management, antibiotics) Measles (vitamin A supplement) Comprehensive care of children exposed to or infected with HIV (highly active antiretroviral therapy HAART) Data from UNICEF, Were WM, Daelmans B, Bhutta Z, et al. Childrens health priorities and interventions. BMJ. 2015;351:h4300. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 3 u Global Child Health 29 measures such as vaccinations and exclusive breastfeeding until 6 months of age. Deaths related to undernutrition, which predisposes children to infectious diseases, may be prevented by proper infant and young child feeding practices, micronutrient supplementation, and community based screening and management of malnutrition. Addressing the SDGs to improve the health of mothers, children, and adolescents takes a life course approach. Figure 3.9 displays esti mates of coverage for essential interventions across the continuum of care, indicating the wide range of coverage rates within countries that will need to be addressed if SDGs are to be attained. Vaccine Preventable Diseases Vaccines prevent an estimated 2.5 million deaths per year among children under 5 years of age. One study predicted a reduction in 120 million deaths among children born between 2000 and 2030 with vaccination programs. Yet in 2019 an estimated 1.15 million under 5 deaths were the result of vaccine preventable diseases, with 99 of these children who died living in LMICs. Top contributors were Streptococcus pneumoniae and rotavirus, followed by Borde tella pertussis, measles virus, Haemophilus influenzae B (Hib), and influenza virus. The WHO Expanded Program on Immunization (EPI) has resulted in a dramatic reduction in deaths, illness, and disability from many of these diseases, in addition to the near elimination of poliomyelitis. Recommendations for routine immunizations have continued to grow with the development of new vaccines that have demonstrated significant lifesaving potential in industrialized countries (Table 3.2). The vulnerability of these programs was dem onstrated during the pandemic as global vaccine coverage dropped from 86 in 2019 to 83 in 2020, with an estimated 23 million under the age of 1 year who did not receive basic vaccines in 2020 the highest number since 2009. In 2015, 86 of the worlds infants were vaccinated with 3 doses of DTP. Although vaccines are very effective in improving child sur vival, rates of coverage are low in many countries. In 2016, a total of 19.5 million did not receive all routine lifesaving vaccinations, and 90,000 deaths were reported due to measles alone. Lifesaving vaccines are still not available in many countries, but progress has been made to expand availability to new countries every year. The lowest number of wild poliovirus cases were reported in 2016 (37 cases). The significant
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declines in immunization coverage caused by the COVID 19 pandemic have increased the risk for a resurgence of these vaccine preventable infections amidst weakened healthcare systems. Reaching Every Child, Everywhere Global vaccine organizations aim for universal coverage of immu nizations but face challenges within countries to attain this goal. Other lifesaving interventions have met barriers to attaining uni versal coverage. Oral rehydration therapy has been the evidence based intervention to prevent dehydration from diarrheal disease since the 1970s, yet only 2 in 5 children under 5 with diarrheal ill ness receive this treatment. The determinants of whether or not a child receives a lifesaving intervention are multifactorial. Charac teristics of a healthcare system, the social attitudes and practices, and political climate affect whether universal coverage can be reached for evidence based essential interventions. Innovations to strengthen vaccine coverage to reach every child in every district of a country range from programs such as Reaching Every Child through Quality Improvement (REC QI), using community map ping techniques, to the integration of service delivery mechanisms and strengthening the health system with improved surveillance. Effective Delivery Strategies: Integrated Management of Childhood Illness Weak health systems impede the ability of countries to deliver cost effective interventions and lifesaving health messages for children. Such systems are characterized by insufficient numbers of health workers, low quality training and supervision, and poorly function ing supply chains. The provision of child health services may focus on a single level such as the health facility, but effective and lasting improvements can only be achieved with the integration of delivery at all levels, such as adequate referrals and follow up between com munity, clinic, and health facility. As countries resume health ser vices after the COVID 19 pandemic, an important component will be community based, lifesaving outreach services such as mass immu nization, vitamin A campaigns, and community based health promo tion activities (Fig. 3.10). Pop ula tio n us ing b as ic sa nit at ion se rv ice s Pop ula tio n us ing b as ic dr ink ing w at er se rv ice s Ora l r eh yd ra tio n sa lts tre at m en t f or d iar rh oe a Car e se ek ing fo r s ym pt om s of p ne um on ia Vita m in A su pp lem en ta tio n (tw o do se s) Rot av iru s i m m un iza tio n M ea sle s i m m un iza tio n (fi rs t d os e) Diph th er ia, te ta nu s, an d pe rtu ss is im m un iza tio n (th re e do se s) Con tin ue d br ea stf ee din g (y ea r 1 ) Exc lus ive b re as tfe ed ing ( 6 m on th s) Pos tn at al vis it f or b
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ab ies Ear ly ini tia tio n of b re as tfe ed ing Pos tn at al vis it f or m ot he rs Skil led b irt h at te nd an ce Neo na ta l te ta nu s p ro te cti on Ant ire tro vir al tre at m en t o f p re gn an t w om en liv ing w ith H IV Ant en at al ca re (a t le as t f ou r v isi ts) Dem an d fo r f am ily p lan nin g am on g m ar rie d w om en sa tis fie d with m od er n m et ho ds Pregnancy Country reporting data Birth Postnatal Infancy Childhood EnvironmentPrepregnancy 0 25 50 75 100 C ov er ag e ( ) Fig. 3.9 Coverage of interventions across the continuum of care based on the most recent data since 2012 in countdown countries. Bars show median national coverage of interventions, whereas the dots show country specific data. (From Countdown to 2030 Collaboration. Countdown to 2030: Tracking progress towards universal coverage for reproductive, maternal, newborn, and child health. Lancet. 2018;391:15381548. Fig. 1.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 3 0 P art I u The Field of Ped iatrics Table 3.2 Routine Childhood Immunizations Recommended by the World Health Organization (2021) ANTIGEN AGE OF 1ST DOSE DOSES IN PRIMARY SERIES INTERVAL BETWEEN DOSES BOOSTER DOSE CONSIDERATIONS1ST TO 2ND 2ND TO 3RD BCG As soon as possible after birth 1 Birth dose and HIV; universal vs selective vaccination; coadministration; vaccination of older age groups; pregnancy Hepatitis B Option 1 As soon as possible after birth (24hr) 3 4 wk (min) with DTPCV1 4 wk (min) with DTPCV2 Premature and low birth weight; coadministration and combination vaccine; high risk groups Option 2 As soon as possible after birth High risk groups 4 4 wk (min) with DTPCV1 4 wk (min) with DTPCV2 Polio bOPV IPV Preferred schedule (fractional SalkIPV permitted) bOPV 6 wk IPV 14 wk 5 (3 bOPV and 2 IPV) bOPV 4 wk (min) (e.g. with DTPCV2) IPV 4 mo (min) (e.g. with MCV) bOPV 4 wk (min) (e.g. with DTPCV3) bOPV birth dose; type of vaccine; fractional dose IPV; transmission and importation risk; local epidemiology, programmatic implications and feasibility for early optionbOPVIPV Early option (full dose IPV only) bOPV 6 wk IPV 6 wk 5 (3 bOPV and 2 IPV) bOPV 4 wk (min) (e.g. with DTPCV2) IPV 14 wk (min) (e.g. with DTPCV3) bOPV 4 wk (min) (e.g. with DTPCV3) IPV bOPV Sequential 8 wk (IPV 1st) bOPV (48 wk after 2nd IPV) 4 (2 IPV followed by 2 bOPV) IPV (48 wk) bOPV (48 wk) IPVonly 68 wk 3 48 wk 48 wk
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IPV booster (6 mo after 3rd dose) is needed when 1st dose given at 8 wk Only for countries in poliofree regions with a very low risk of importation and sustained high routine immunization coverage (DTP3 90) Alternative IPVonly (fractional permitted) 14 wk 2 4 mo (e.g. with MCV) D ow nloaded for m oham ed ahm ed (dr.m m s2020 gm ail.com ) at U niversity of Southern C alifornia from C linicalK ey.com by Elsevier on A pril 20, 2024. For personal use only. N o other uses w ithout perm ission. C opyright 2024. Elsevier Inc. A ll rights reserved. C hap ter 3 u G lo b al C hild H ealth 3 1 ANTIGEN AGE OF 1ST DOSE DOSES IN PRIMARY SERIES INTERVAL BETWEEN DOSES BOOSTER DOSE CONSIDERATIONS1ST TO 2ND 2ND TO 3RD DTPcontaining vaccine 6 wk (min) 3 4 wk (min) 8 wk 4 wk (min) 8 wk 3 boosters 1223 mo (DTP containing vaccine); 47 yr (TdDT containing vaccine); and 915 yr (Td) Delayed interrupted schedule Combination vaccine; Maternal immunization Haemophilus influenzae type b Option 1 6 wk (min) 59 mo (max) 3 4 wk (min) with DTPCV2 4 wk (min) with DTPCV3 Single dose if 12 mo of age; not recommended for children 5 yr; delayedinterrupted schedule; coadministration and combination vaccine Option 2 23 8 wk (min) if only 2 doses 4 wk (min) if 3 doses 4 wk (min) if 3 doses At least 6 mo (min) after last dose Pneumococcal (conjugate) Option 1 3p0 6 wk (min) 3 4 wk (min) 4 wk Schedule options (3p0 vs 2p1);vaccine options; HIV and preterm neonate booster; vaccination in older adults Option 2 2p1 6 wk (min) 2 8 wk (min) 918 mo Rotavirus 6 wk (min) with DTP1 2 or 3 depending on product 4 wk (min) with DTPCV2 For three dose series 4 week (min) with DTPCV3 Not recommended if 24 mo Measles 9 or 12 mo (6 mo min) 2 4 wk (min) Coadministration live vaccines; combination vaccine; HIV early vaccination; pregnancy Rubella 9 or 12 mo with measles containing vaccine 1 Achieve and sustain 80 coverage; coadministration and combination vaccine; pregnancy HPV As soon as possible from 9 yr (females only) 12 612 mo Target 914 yr old females; offlabel 1 dose schedule; MACs with intro; pregnancy; HIV and immunocompromised Please see WHO reference for specific vaccine recommendations for children residing in certain regions and in highrisk populations and more detailed footnotes. https:cdn.who.intmediadocsdefaultsourceimmunizationimmunization schedulestable2feb2023english.pdf?sfvrsn3e27ab4811downloadtrue. Interval between 3rd and 4th, bOPV (48 wk). D ow nloaded for m oham ed ahm ed (dr.m m s2020 gm ail.com ) at U niversity of Southern C alifornia from C linicalK ey.com by Elsevier on A pril 20, 2024. For personal use only. N o other uses w ithout perm ission. C opyright 2024. Elsevier Inc. A ll rights reserved. 32 Part I u The Field of Pediatrics Community based interventions are effective in extending health care delivery, are low cost, improve healthcare
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seeking behavior, and can reduce infant and child mortality and morbidity. They may include community health workers (CHWs), who are members of a commu nity without formal medical training chosen to provide basic health and medical care to their community, as discussed in more detail later. The lack of integration of programs that deliver individual inter ventions results in missed opportunities. Children may receive immunizations from one health worker at one encounter, but go somewhere else to obtain oral rehydration solution (ORS) for diar rheal illness and yet elsewhere for treatment of malnutrition. Past programs focused on a single disease and set of interventions, whereas most children present with overlapping signs and symp toms to community level health facilities with limited diagnostic tools such as laboratories or radiography. The Integrated Management of Childhood Illnesses (IMCI) was launched in the mid 1990s by UNICEF and the World Health Organization (WHO) as an approach to reduce child death, ill ness, and disability and to promote improved growth and develop ment in countries struggling with high child mortality rates. The IMCI was designed to increase coverage of evidence based, high impact interventions that tackle the top causes of child mortality by integrating health promotion, illness prevention, and disease treatment. The IMCI contains both preventive and curative elements that are set forth through a series of clinical algorithms and guidelines for case management (Fig. 3.11 provides an example) and imple mented by families, communities, and providers at health facili ties. One key component of the IMCI strategy is to train CHWs to use the algorithms to identify signs of common childhood illness and to decide when a child needs referral to a health facility. IMCI trains CHWs to instruct parents on home management of ill chil dren, including ORS and zinc for diarrhea, antimalarial medicine for febrile children who test positive for malaria, and antibiotics for children with signs of pneumonia. CHWs can schedule follow up visits for ill children. They also promote use of bed nets, hand washing, and proper infant and young child feeding. In 2003, the IMCI guidelines underwent minor transitions, including the addi tion of newborn care under 1 week of age, so that it was renamed Integrated Management of Newborn and Childhood Illnesses (IMNCI). Over 100 countries have adopted the IMNCI and implement some or all of its components that include not only improving health workers skills but also strengthening health systems and improving family and community practices. After 20 years of implementation, a recent review of the IMNCI strategy noted that it was associated with a 15 reduction in child mortality when activities were prop erly implemented in health facilities and communities. However, the implementation of IMNCI was found to be uneven between and within countries. In many countries the resources for CHW training and supervision, supply of medications, and referrals were limited or absent. The IMNCI was only successful in those countries with strong government leadership and a commitment to implement IMNCI in partnership with support from
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groups such as UNICEF and the WHO. The success of IMNCI required an adequate health system and a systematic approach to planning and implementation. Social Protection Programs: Conditional and Unconditional Cash Transfers Financial incentives are widely used to improve healthcare cover age, alleviate poverty, and improve access to child health services. In industrialized countries, cash transfers are a common mecha nism for ensuring that the poorest, most marginalized subgroups of the population, particularly with children, receive adequate support to meet their basic needs. Before the COVID 19 pandemic, cash transfer schemes were increasingly being used in LMICs to support population needs, and COVID 19 led to an enormous elevation of social protection efforts as a critical response to mitigate the far reaching impact of the pandemic on vulnerable communities. Many lessons have been learned during this escalation of social protection programs, which provides hope for continued support of families in need, in addition to an expansion of services to mitigate the pro jected increases in children living in extreme poverty. Out of pocket expenses by households form the major share of total health expenditure in most LMICs. Many social protection programs serve a dual purpose of reducing financial barriers and strengthening service delivery. Financial incentives may include cash transfers, microcredit, vouchers, and user fee removal and health insurances. Financial incentive programs may be uncon ditional, provided to eligible families without any requirements or expectations, based on the belief that families will use this type of financial support for their childrens best interests. Other incentives are conditional on health promotion behavior target ing child health, such as the provision of cash or vouchers only to those families who participate in mother groups to learn about breastfeeding practices, visiting clinics for child vaccinations and growth monitoring, engaging in deworming, and ensuring that their children receive vitamin A and iron supplementation. Some social protection programs are also directed towards educational improvement by making cash transfers conditional on child school enrollment, attendance, and occasionally on some measure of aca demic performance. Expansions of innovations that have been scaled up quickly dur ing the pandemic protected millions of families such as through mobile cash transfer programs that take advantage of data and technology to better target those in need. Certain countries with a large proportion of children at risk are projected to have a pro tracted recovery period. Efforts have been taken to identify and provide international support for these countries and communities (Fig. 3.12). Effective Health Care Service Delivery CostEffective Interventions Health Workers Quality Care Supply Chains Community Health Worker numbers, trained medicine, vaccines, etc Health Facility Clinical Curative Clinic Clinical Curative Prevention Community Prevention Health Promotion Clinical Curative (e.g. CHWs) Outreach e.g. polio campaigns Fig. 3.10 Health services delivery systems. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 3 u Global Child Health 33 ASSESS CLASSIFY
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ILLNESS and IDENTIFY TREATMENT TREAT the child or REFER COUNSEL the MOTHER FOLLOWUP CHECK the child FOR GENERAL DANGER SIGNS Example Example ASK: LOOK: Is the child able to drink or breastfeed? Does the child vomit everything? ASK about MAIN SYMPTOMS Does your child have a cough or difficulty breathing? Does your child have diarrhea? Fever? Eating problem? Then check for Malnutrition and Anemia Then check for Immunization, Vitamin A, Deworming Has the child had convulsions? Is the child lethargic or unconscious? Is the child convulsing now? A child with any general danger signs needs URGENT attention; complete the assessment and any prereferral treatment immediately so that referral is not delayed. IF YES, ASK: LOOK, LISTEN, FEEL: For how long? Count the breaths in one minute. Look for chest indrawing. Look and listen for stridor. Look and listen for wheezing. CHILD MUST BE CALM SIGNS Teach the mother to give oral drugs at home Counsel mother Example PNEUMONIA Give first dose of an appropriate antibiotic Refer URGENTLY to hospital Give oral antibiotic for 3 days If wheezing (even if it disappeared after rapidly acting bronchodilator) give an inhaled bronchodilator for 5 days Soothe the throat and relieve the cough with a safe remedy If coughing for more than 3 weeks or if having recurrent wheezing, refer for assessment for TB or asthma Advise the mother when to return immediately Followup in 2 days If wheezing (even if it disappeared after rapidly acting bronchodilator) give an inhaled bronchodilator for 5 days Soothe the throat and relieve the cough with a safe remedy If coughing for more than 3 weeks or if having recurrent wheezing, refer for assessment for TB or asthma Advise the mother when to return immediately Followup in 5 days if not improving After 2 days: Ask: Check the child for general danger signs. Assess the child for cough or difficult breathing. See ASSESS CLASSIFY chart. Administer certain treatment only in the Clinic Give appropriate antibiotics for pneumonia, local infection (eye, ear mouth, throat) E.g. treatment for convulsions, severe malaria, low blood sugar, IM antibiotics Infant and Child Feeding: Fluid intake Mothers own health When to return to health worker Give inhaled bronchodilator for wheezing, Iron for anemia: Antimalaria for malaria CLASSIFY AS TREATMENT (Urgent prereferral treatments are in bold print) Fast breathing No signs of pneumonia or very severe disease Any general danger sign or Chest indrawing or Stridor in a calm child SEVERE PNEUMONIA OR VERY SEVERE DISEASE PNEUMONIA COUGH OR COLD Is the child breathing slower? Is there less fever? Is the child eating better? Fig. 3.11 Integrated management of childhood illnesses (IMCI) Generic IMCI table for appraisal of respiratory symptoms, with each algorithm tailored to the specific country context before implementation. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 34 Part I u The Field of Pediatrics 1,025 1,0264,035
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4,03612,475 12,475 No Data Subnational GNI per capita, 2015 Fig. 3.12 Subnational poverty hotspots for extreme poverty (2015), based on GNI per capita. (From Desai R, Kharas H, Ozdogan S. Poverty hot spots and the correlates of subnational development. Brookings Institution. Dec. 2020. Global working paper 149. https:www.brookings.eduwp contentuploads202012Poverty hotspotsfinal.pdf.) Fig. 3.13 Country categorization based on adolescent bur den of disease. Categorization into 3 groups according to adolescent burden of disease and reflecting passage through epidemiologic transition. DALYs, Disability adjusted life years; NCD, noncommunicable diseases. (From Patton GC, Sawyer SM, Santelli JS, et al. Our future: A Lancet commission on ado lescent health and wellbeing. Lancet. 2016;387:24232478, Fig. 7.) Diseases of poverty Multiburden 2500 diseases of poverty DALYs per 100000 per year Injuries Injury excess 2500 injuries 2500 diseases of poverty DALYs per 100000 per year Noncommunicable diseases NCD predominant 2500 injuries 2500 diseases of poverty DALYs per 100000 per year Infectious and vaccine preventable diseases Undernutrition HIV Sexual and reproductive health Unintentional injuries Violence Physical disorders Mental disorders Substance use disorders CHALLENGES IN GLOBAL HEALTH Adolescent health. The Global Strategy, which directs countries to attain their SDGs, has called upon countries to focus efforts to support adolescent health given the potential role in breaking the intergenerational cycle of poverty. One challenge to attaining these health goals will be to effectively advocate for governments to invest in this age group as a means to improve national productivity and the economy. Considerable gaps in data on adolescents pose one of the biggest challenges to promoting their health and their rights. Data on early adolescents age 10 14 is relatively scarce, thus limit ing the knowledge of this crucial period. Efforts to promote youth participation in delineating their health priorities are essential to the design of effective interventions. One critical strategy to support adolescents is to improve completion of secondary school education, particularly among girls. The development of adolescents capacities and values through education can empower an entire generation to become economically independent, to become posi tive contributors to society, and to break out of the cycle of poverty. Other threats to adolescent health include mental health, sub stance abuse, sexual and reproductive health, and noncommuni cable diseases (NCDs) such as obesity, which vary depending on country (Fig. 3.13). The surge in adolescent pregnancies that has been reported in several countries during the COVID 19 pandemic places particular emphasis on the need to strengthen youth access to sexual and reproductive education and services. A common theme for these threats is that interventions to combat these issues must attempt to influence individual behavior and atti tudes while promoting healthy lifestyles. It is estimated that around 20 of the worlds adolescents have a mental health or behavioral problem, and this has only increased since the COVID 19 pan demic. Depression is the single largest contributor to the global burden of disease for people age 15 19, and suicide is one of the three leading causes of mortality among people age 15 35. Efforts to
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tackle these problems will require an interdisciplinary approach, with more research needed to identify and evaluate interventions to effectively influence adolescent behavior in LMIC settings. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 3 u Global Child Health 35 Climate change. Climate change is the most urgent and alarming long term threat to child health and well being in this century. Con tributing to environmental degradation, the loss of natural resources and change in climate undermine food and water sources. Climate change and an increased frequency and severity of humanitarian crises have already adversely affected childrens health and nutrition. Advo cacy at local, national, and international levels to reduce greenhouse gas emissions are needed. Conflict, emergency situations, and migration. During times of cri sis, children, adolescents, and women are most vulnerable (Fig. 3.14). Although the youngest are the most likely to perish because of disease or injuries, all children suffer as a result of food shortages, poor water and sanitation, interrupted education, and family separation or displace ment. Approximately 281 million migrants live outside their countries of birth, which includes 35 million young children and adolescents under the age of 20 who have migrated either with their parents or are unac companied. Many other children are affected by migration through parental separation because of deportation or emigration. Children and adolescents crossing borders are often not enti tled to the same protections and rights as those who reside in a given country, leaving them at greater risk of discrimination and exploitation. A rights based approach to migration is required to reinforce the steady buildup of support and attention to migration issues at the international and national levels. This approach must also address the long term social and health consequences and the root causes of migration (e.g., instability, inequality, discrimination, poverty) in the country of origin and should incorporate policies specifically targeted for young children, adolescents, young women, and vulnerable populations, including those left behind when fam ily members migrate away (Fig. 3.15). Health information and communications technology. The wide spread proliferation of health information and communications tech nology (HICT) has transformed health care. Social media and mobile apps can be used to raise awareness and build skills, especially in LMICs, where other channels of public health messages may not be readily accessible. The dissemination of HICT has not been equitable. The majority of LMICs are still in the early stages of adoption. Many healthcare settings in LMICs rely exclusively on paper based records or simple electronic data capture tools such as spreadsheets for disease sur veillance, reporting, and research. Barriers to implementing HICT in LMICs include lack of health data infrastructures, reliable inter net and electricity, workforce training, tools that fit local healthcare needs and culture, and sustainable funding. A further challenge is the need to ensure privacy and security while standardizing the for
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mat in which health data are captured to permit sharing of health information across facilities to reduce costly inefficiencies and to improve quality of care. Balanced partnerships between health care and technology communities across low, middle, and high income countries are needed to share knowledge, foster innovation, and strengthen health information systems to advance equitable health outcomes. Visit Elsevier eBooks at eBooks.Health.Elsevier.com for Bibliography. Fig. 3.15 Intersection between adverse childhood experi ences during migration and social determinants of health and their long term effects. Protective childhood experiences can act as a buffer so that adverse health conditions of child hood and adolescence are less prolonged and less severe in adulthood. (From Maioli SC, Bhabbha J, Wickramage K, et al. International migration of unaccompanied minors: Trends, health risks, and legal protection. Lancet Child Adolescent. 2021;5:882895.) Adverse childhood experiences across migration phases Before migration Conflict and war Torture Persecution Climate change Transit Physical and sexual abuse Physical and emotional neglect Loss and injury Arrival Discrimination Acculturation stress Prolonged detention Chronic uncertainty Social determinants of health Interruption of education Financial instability Substandard accommodation Inequality Health outcomes as children or adolescents Mental health conditions Nutritional deficiencies Poor dental health Substance use Health outcomes in adulthood Mental health conditions Chronic disease (eg, diabetes or cardiovascular disease) Substance use Protective childhood experiences Peer and social support Access to health care and education Psychosocial and mental health care 2009 2010 2011 2012 2013 2014 2015 2016 2017 0 10000000 20000000 30000000 40000000 50000000 60000000 Year Children (04 years) Children (517 years) Women (18 years) N um be r of w om en a nd c hi ld re n Fig. 3.14 Estimated number of children and women displaced by conflict, 20092017. (From Bendavid E, Boerma T, Akseer N, et al. The ef fects of armed conflict on the health of women and children. Lancet. 2021;397:522530, Fig. 2, p. 524.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 36 Part I u The Field of Pediatrics THE NEED FOR IMPROVEMENT IN QUALITY AND VALUE Adults and children receive recommended evidence based care only about half the time. The gap between knowledge and practice widens to a chasm in part because of variations in practice and disparities in care from doctor to doctor, institution to institution, geographic region to geographic region, and socioeconomic group to socioeconomic group. Furthermore, it is estimated that it routinely takes more than a decade for new knowledge to be adopted into clinical practice. In addition to appropriate care that patients do not receive, the U.S. healthcare systems also deliver much care that is unnecessary and waste many resources in doing so. This overuse or waste is one key driver of the disproportionate costs of care in the United States compared with other developed countries delivery systems (in 2016, the United States spent about twice as much per capita,
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adjusting for gross domestic product GDP, on healthcare com pared to the average of peer wealthy nations). It is estimated that more than one quarter of all U.S. healthcare spending is waste. Gaps in appropriate care, combined with overuse and high costs, have driven conversations about the need to improve the value of care, which would mean better quality at lower overall costs. Choosing Wisely, an initiative initially sponsored by the American Board of Internal Medicine Foundation and subsequently endorsed by the American Academy of Pediatrics (AAP), asked medical societies to identify overused practices that clinicians could then make collec tive efforts to address. WHAT ARE QUALITY AND VALUE? The National Academy of Medicine (NAM) defines quality of healthcare as the degree to which healthcare services for individu als and populations increases the likelihood of desired health out comes and are consistent with current professional knowledge. To measure healthcare quality, they identified Six Dimensions of Qual ity: effectiveness, efficiency, equity, timeliness, patient safety, and patient centered care. Healthcare services need to be effective, which means that they should result in benefits and be grounded in evidence whenever possible. Healthcare services also need to be effi cient, which incorporates the idea of avoiding waste and improving system cost efficiencies, and the services should be safe for patients. Healthcare services must be timely, thus incorporating the need for appropriate access to care (see Chapter 5). Healthcare services should be equitable, which highlights the importance of minimiz ing variations as a result of race, ethnicity, gender, geographic loca tion, and socioeconomic status (SES). Healthcare quality should be patient centered, which underscores the importance of identifying and incorporating individual patient needs, preferences, and val ues in clinical decision making. In pediatrics, the patient centered dimension extends to family centeredness, so that the needs, pref erences, and values of parents and other child caregivers are consid ered in care decisions and system design. This framework emphasizes the concept that all Six Dimensions of Quality need to be met for the provision of high quality healthcare. Collectively, the Six Dimensions of Quality represent quality in the overall value proposition of quality per cost. Value remains a critical concept, though difficult to measure accurately. The evolving healthcare system requires physicians, health care providers, hospitals, and healthcare organizations to partner together and with patients to define, measure, and improve the overall quality and value of care delivered. Concrete examples of the evolving U.S. perspective include the widespread adoption of Maintenance of Certification (MOC) requirements by medical certifying bodies, which require providers to engage in activities that improve care in their practices, and the core quality measure ment features and population health incentives of the Patient Pro tection and Affordable Care Act (ACA) of 2010. The ACA also established the Patient Centered Outcomes Research Institute (PCORI) to develop a portfolio of effectiveness and implementa tion research that requires direct engagement of patients and fami lies to partner in setting research priorities, formulating research questions, and designing studies that will
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directly affect the needs of patients to improve the value of the research. Although significant progress has been made along many dimen sions of quality, a notable gap is the lack of progress on addressing inequities in healthcare. Disparities in healthcare based on racial or ethnic background, SES, and for patients and families with limited English proficiency are well documented and include inequities in access to care, treatment of pain, and in number of adverse events experienced during acute hospitalizations (see Chapter 2). FRAMEWORKS FOR QUALITY IMPROVEMENT Quality improvement (QI) science is a predominant method used to close gaps and improve value. Initially focused on improving per formance and reliability in care processes, more recently, in part inspired by the Institute for Healthcare Improvements Triple Aim approach, QI is also being used to improve value for populations of patients by focusing more on outcomes defined by patients needs. The Triple Aim included (1) improving the patient experience of care, (2) improving the health of populations, and (3) reducing per capita cost of healthcare. The Quadruple Aim approach adds the fourth dimension of healthcare worker experience, or joy in work, to focus delivery systems on the need to consider the resilience and safety of the clinical workforce in order to maintain the delivery of high value care. Quality is broader in scope than QI. Many quality measurement systems have attempted to be more transparent with clinicians and patients about costs of care. Because more direct costs have been shifted to patients and families through widespread adoption of high deductible insurance plans (i.e., families experience lower up front insurance coverage costs but pay for certain acute healthcare expenses out of pocket until the preset deductible is met), better awareness of costs has become a more important driver of improve ment in value, in part by reducing overuse. The applied science of QI currently in use in healthcare is also firmly grounded in the classic scientific method of observation, hypothesis, and planned experimentation. There are four key fea tures of the applied science of QI: appreciation of systems, under standing variation, knowledge theory, and psychology of change. In addition to this theoretical framework, statistical analytic tech niques have evolved to better evaluate variable systems over time. Although each derives key features from this applied scientific foundation, multiple QI methodologies are currently in use in healthcare. At their most parsimonious level, each method can be described as a three step model: Data Information Improve ment. Quality needs to be measured. Data obtained from measure ment needs to be converted into meaningful information that can be analyzed, compared, and reported. Information must then be actionable to achieve improvements in clinical practice and health systems processes. Some common approaches to conducting QI in healthcare, many of which originated in manufacturing, include Model for Improvement, Six Sigma, and Lean methodologies. These approaches are not mutually exclusive and share common features and tools. The Model for Improvement is an overarching framework Chapter 4 Quality and Value in Healthcare
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for Children Trisha L. Marshall, Amanda C. Schondelmeyer, and Jeffrey M. Simmons Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 4 u Quality and Value in Healthcare for Children 37 for improvement. Six Sigma focuses largely on reducing variation in processes, and Lean focuses on eliminating waste. Model for Improvement The Model for Improvement is structured around three key ques tions: (1) What are we trying to accomplish? (2) How will we know that a change is an improvement? and (3) What change can we make that will result in improvement? Clarifying the first question, the goal, is critical and is often a step skipped by clinicians, who typically already have change ideas in mind. The second question is about defining measures, with an emphasis on practicality and efficiency. The third question is about defining testable ideas for improvement, which are subsequently tested using a framework of rapid cycle improvement, also known as the plan do study act (PDSA) cycle (Fig. 4.1A). The PDSA cycle is typically aimed at testing small care process changes in iterative, rapid cycles. After discrete testing periods, results are analyzed, and the next cycle of change testing is planned and implemented (i.e., multiple PDSA cycles, often called a PDSA ramp, build on previous learning from PDSAs; see Fig. 4.1B). Valuable information can be obtained from PDSA cycles that are successful, and those that are not, to help plan the next iteration of the PDSA cycle. The PDSA cycle specifically requires that improvements be data driven. Many clinicians attempt to make changes for improvement in their practice based on clinical intuition rather than on interpretation of empirical data. Data can be either quantitative or qualitative in nature. One successful QI collaborative using the Model for Improvement in the outpatient setting is related to improvements in remission rates and reduction in systemic corticosteroid use among children with inflammatory bowel disease (IBD, Crohn disease, or ulcerative colitis). This work was supported by the ImproveCareNow Network (https:improvecarenow.org), a learning health system. A learning health system is a collaborative endeavor organized around com munities of patients, clinicians, and researchers working together to integrate research with QI (i.e., knowledge dissemination and implementation) to improve care delivery while advancing clinical research. For the IBD network, outpatient gastroenterology practices standardized treatment approaches to align with existing evidence through QI interventions adapted to local circumstances. Therapeu tic decisions for individual patients remained at the discretion of physicians and their patients. Six Sigma Six Sigma is related to the reduction in undesirable variation in pro cesses. Six Sigma attempts to provide a structured approach to unwanted variations in healthcare processes. Six Sigma approaches have been successfully used in healthcare to improve processes in both clinical and nonclinical settings. Lean Methodology Lean methodology focuses on reducing waste within a process in a system. Figure 4.2A illustrates the steps in
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the process of a patient coming to the emergency department (ED). After the initial regis tration, the patient is seen by a nurse and then the physician. In a busy ED, a patient may need to wait for hours before registration is complete and the patient is placed in the examination room. This wait time is a waste from the perspective of the patient and the fam ily. Incorporating the registration process after placing the patient in the physician examination room can save time and minimize waste (see Fig. 4.2B). Lean methods have been successfully used in several outpatient and inpatient settings with resulting improve ments in efficiency. Lean principles have also been adopted as a core strategy for many childrens hospitals and health systems with the goal of improving efficiencies, including access, while reduc ing waste. These efforts can improve aspects of quality while also PDSA Cycle Plan Study Act Do A Evidence Best practice Testable ideas DATA Changes that result in improvement Very small scale test Followup tests Widescale tests of change Implementation of change P S D A PS D D S P A A P S D A B Fig. 4.1 A, The plan do study act (PDSA) cycle. B, Use of PDSA cy cles: a ramp. (From Langley GJ. The Improvement Guide: A Practi cal Guide to Enhancing Organizational Performance. San Francisco: Jossey Bass:1996. Copyright 1996 by Gerald J. Langley, Kevin M. No lan, Thomas W. Nolan, L. Norman, and Lloyd P. Provost.) Step 1: Patient arrives in E.R. Step 2: Patient is registered Step 3: Patient is seen by nurse Step 4: Patient is seen by doctor Step 1: Patient arrives in E.R. Step 2: Patient is registered Step 3: Patient is seen by nurse B. Lean Implementation Reduces Waste by Incorporating Step 2 into Steps 3 or 4 A. Original Process Step 4: Patient is seen by doctor Fig. 4.2 A and B, Lean methodologywaste reduction. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 38 Part I u The Field of Pediatrics typically reducing costs. Another key principle of Lean methods is the empowerment of the workforce and frontline leaders to make changes that reduce hassles for them and for patients. Tools for Organizing Quality Improvement Theory and Execution QI efforts need to be organized around a theory of how the desired changes in outcome will be achieved. Multiple tools are available to help organize a QI teams thinking and execution. These tools typically help teams organize work into discrete projects or phases, and some of them also help teams develop change ideas. Key driver diagrams (KDDs) are a tool to organize the theory of learning that underpins a QI project (Fig. 4.3), using the Model for Improvement. Important aspects of a KDD include a statement of the specific aim or improvement goal; a list of the
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key themes, or drivers, that are theorized to require improvement in order to achieve the aim; and lastly a list of the discrete change ideas or initiatives to be tested to determine whether or not they affect discrete drivers, and therefore the overall aim. Because most system outcomes are driven by multiple fac tors, a KDD allows a QI team to depict a theory that addresses multiple factors. Similarly, Lean and Six Sigma projects use a tool called an A3 that, in addition to organizing the theory of a project, also prompts teams to assess the current state and consider timelines and personnel for planned change (examples are available at https:www.lean.orgco mmondisplay). There are additional QI tools to help assess the current state of a system to better understand how to improve it. One, the failure modes and effects analysis (FMEA), also helps teams develop change ideas (Fig. 4.4). Starting with a map of the processes in the current system, FMEA then asks teams to investigate and brain storm the many ways discrete processes can go wrongthe failure modes. Once failure modes are identified, teams begin to develop discrete interventions or countermeasures to address the failures (see Chapter 5). A similar tool, the fishbone or cause and effect diagram, is organized around key components in a system (e.g., people, material, machines) and helps a team catalog how deficien cies in each component can affect the overall outcome of a system. Another tool to help teams prioritize action is a Pareto chart, which organizes system deficiencies in terms of their prevalence (Fig. 4.5). A Pareto chart typically displays the individual prevalence of dis crete problems, determined by baseline analysis of data, as well as the cumulative prevalence, helping teams see which problems should be addressed first to maximize impact on the overall outcome. MEASURING QUALITY Robust quality indictors should have clinical and statistical relevance. Clinical relevance ensures that the indicators are meaningful to patient care from the standpoint of patients and clinicians. Statistical relevance ensures that the indicators have measurement properties to allow an acceptable level of accuracy and precision. These concepts are captured in the national recommendations that quality measures must meet the criteria of being valid, reliable, feasible, and usable (Table 4.1). Valid ity of quality measures refers to the measure being an estimate of the true concept of interest. Reliability refers to the measure being repro ducible and providing the same result if retested. It is important that quality measures are feasible in practice, with an emphasis on how the data supporting the measures are collected. Quality measures must be usable, which means that they should be clinically meaningful. The Agency for Healthcare Research and Quality (AHRQ) and the National Quality Forum have provided specific criteria to be considered when developing quality measures. Aim Aim Primary driver Primary drivers Primary driver Primary driver Primary driver Secondary driver Secondary driver Secondary drivers Change idea Change ideas Change idea Change idea Change idea Change idea Change idea Change idea Change
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idea Secondary driver Secondary driver Secondary driver Secondary driver Secondary driver Secondary driver Fig. 4.3 Key driver diagram: theory of how to achieve an aim. Simplified failure mode effects analysis In te rv en tio ns Fa ilu re m od es C ur re nt pr oc es s Fig. 4.4 Failure modes and effects analysis (FMEA). 100 90 80 70 60 50 40 30 20 10 44.0 Category name C at eg o ry p er ce n ta g es Individual quantities percentages Cumulative percentages 58.9 73.8 87.9 100.0 24.8 35 27 21 21 20 17 0 Fig. 4.5 Pareto chart. Table 4.1 Properties of Robust Quality Measures ATTRIBUTE RELEVANCE Validity Indicator accurately captures the concept being measured. Reliability Measure is reproducible. Feasibility Data can be collected using paper or electronic records. Usability Measure is useful in clinical practice. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 4 u Quality and Value in Healthcare for Children 39 Several categories of quality measures can be used to measure the performance of healthcare systems: structure, process, outcome, and balancing. Structure refers to the organizational characteristics in healthcare delivery. Examples of organizational characteristics are the number of physicians and nurses in an acute care setting and the availability and use of systems such as electronic health records (EHRs). Process measures estimate how services are provided; examples are the percentage of families of children with asthma who receive an asthma action plan as part of their office visit and the per centage of hospitalized children who have documentation of pain assessments as part of their care. Outcome measures refer to the final health status of the child; examples are risk adjusted survival in an intensive care unit setting, birthweight adjusted survival in the neo natal intensive care unit (NICU) setting, and the functional status of children with chronic conditions such as cystic fibrosis. Balancing measures are often used to ensure changes in processes or systems do not have unintended consequence. If a healthcare system is actively working to reduce hospital length of stay for common conditions, it would be beneficial to ensure that hospital readmission rates are not increasing. It is important to distinguish between measures for account ability and measures for improvement. Measures, particularly measures for accountability that may be linked to attribution and payment, must be based on a rigorous process (Fig. 4.6). This can be resource intensive and time consuming. In contrast, measures for improvement serve a different purposeto track incremental improvements linked to specific QI efforts. These may not undergo rigorous testing, and they often have limited applicability beyond the specific QI setting. Quality data can be quantitative and qualitative. Quantitative data includes numerical data, which can be continuous (patient sat isfaction scores represented as a percentage, with higher numbers indicating better satisfaction) or categorical (patient satisfaction scores from a
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survey using a Likert scale indicating satisfactory, unsatisfactory, good, or superior care). Data can also be qualitative in nature, which includes nonnumerical data. Examples of qualita tive data can include results from open ended surveys related to the experience of care in a clinic or hospital setting. Data measuring quality of care can be obtained from a variety of sources, which include chart reviews, patient surveys, existing administrative data sources (i.e., billing data), disease and specialty databases, and patient registries, which track individual patients over time. Sources of data vary in terms of reliability and accuracy, which will influence rigor and therefore appropriate use cases for the data; many national databases invest significant resources in implementing processes to improve data reliability and accuracy. Data quality can become a significant impediment when using data from secondary sources, which can adversely affect the overall quality evaluation. Health information technology (HIT) is a critical component in the effort to improve quality. EHRs have resulted in an unprecedented rise in available healthcare data, including traditional, structured data fields such as patient demographic and billing diagnosis codes, as well as unstructured data such as written clinician documentation in notes and imaging studies. The 21st Century Cures Act aims to facilitate the exchange and use of electronic health information without special effort on the part of the user. The Cures Act was designed to address concerns about interoperability and usability of electronic health sys tems, which can be barriers to care, improvement, and research. The potential applications of big data in quality improvement are far reaching and include advancements in clinical informatics designed to better predict, manage, and treat common illnesses and provide effec tive, evidence based, real time, clinical decision making support. For example, the Hospital for Sick Children at the University of Toronto is using a real time data gathering and analysis framework to detect sub tle changes on infant heart monitors that may predict potential cases of late onset neonatal sepsis. ANALYZING QUALITY DATA The classic statistical approach from a research paradigm has been applied to quality data for comparing trends over time and differ ences before and after an intervention. Another approach from an improvement science paradigm uses techniques such as run charts and statistical process control (SPC) charts to track data longitu dinally to assess for changes in a system over time. There are sev eral advantages to using run or SPC charts when analyzing quality Begin quality measure process Formation of leadership teamMultidisciplinary group Diversity in geographic locationsunits Include family representation Identify expert work group Experts meet and discuss ideas Experts meet to discuss evidence and gaps Obtain consensus Team Conducts more research Proceed with measure development YesNo Public comment Field testing Need for ongoing updating of measure Measure complete Measure respecification and evaluation Specify measures Obtain IRB approval Team Research existing evidence Team Review gaps in measurement Fig. 4.6 Development of a rigorous quality measure. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier
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on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 40 Part I u The Field of Pediatrics datafor example, these tools allow evaluation of the effectiveness of various interventions in near real time. Additionally, when using an SPC chart QI teams can also more clearly assess how variation in a process or system is changing over time. Two types of varia tions are important to distinguish between. Random variation, also called common cause variation, refers to the variation that is inher ent in a process and is expected in any system. In contrast, spe cial cause variation refers to nonrandom variation that can affect a process and implies something in the system has been perturbed. When tracking infection rates in a nursery, for example, a sudden increase in the infection rates may be secondary to a planned or unexpected change in a product or supply critical to infection pre vention. This would represent a special cause variation; once the supply issue is resolved or mitigated, the system perturbation is resolved, and the infection rates will likely go back to the baseline level. Alternatively, improvement ideas are intended to perturb the system positively such that outcomes improve, ideally without exac erbating the variation in the system (Fig. 4.7). Both run and SPC charts have established rules to assess for special cause variation or a statistically significant change in a process or system over time. EXPANDING INDIVIDUAL QUALITY IMPROVEMENT INITIATIVES TO SCALE Despite the success of individual QI projects, the overall progress to achieve large scale improvements to reach all children across the spectrum of geographic location and SES remains limited. This contributes to the health disparities that persist for children, with significant differences in access and quality of care. A potential fac tor that limits the full impact of QI is the lack of strategic alignment of improvement efforts with hospitals, health systems, and across states. This challenge can be viewed from a system standpoint in being able to conduct and expand QI from a micro level (individual proj ects), to the meso level (regional), to the macro level (national and international). The learning from individual QI projects for addressing specific challenges can be expanded to the regional level by ensuring that there is optimal leadership, opportunity for education, and adoption of improvement science (Fig. 4.8). To fur ther expand the learning to a national and international level, it is important to leverage implementation science to allow a strategic approach to the identification of the key factors that influence suc cess. To leverage fully the synergies in order to impact the quality of care delivered to children, it is important for national and inter national healthcare organizations to collaborate effectively from a knowledge management and improvement standpoint (Table 4.2). COMPARING AND REPORTING QUALITY At the health system level, there is an increasing emphasis on qual ity reporting in healthcare in the United States. Many states have mandatory policies for the
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reporting of quality data. This report ing may be tied to reimbursement using the approach of pay for performance (P4P), which implies that reimbursements by insurers to hospitals and physicians will be partially based on the quality metrics. An extension of the P4P concept relates to the implemen tation of the policy of nonreimbursable hospital acquired con ditions, formerly called never events by the Centers for Medicare and Medicaid Services (CMS). CMS has identified a list of hospital acquired conditions, which are specific quality events that will result in no payment for subsequent care provided to patients, such as wrong site surgery, central lineassociated bloodstream infec tions (CLA BSIs), and pressure ulcers. This approach has not yet been widely implemented for pediatric patients. There are growing, internet based, commercial platforms for sharing information about patient and family experiences of care with specific clinical sites and specific providers. Many childrens hospitals have also developed their own websites for voluntarily reporting their quality information, including ratings of care expe riences. Although greater transparency may provide a competitive advantage to institutions, the underlying policy goal of transpar ency is to improve the quality of care being delivered and for fami lies to be able to make informed choices in selecting hospitals and providers for their children. When comparing quality measures across clinical settings, it is important to perform risk adjustments. Risk adjustment is the sta tistical concept that uses measures of underlying severity or risk so that the outcomes can be compared in a meaningful manner. The importance of risk adjustment was highlighted in the pediatric intensive care unit (PICU) setting many years ago. The unadjusted mortality rate for large tertiary care centers was significantly higher than that for smaller hospital settings. However, after severity of illness risk adjustment, it was subsequently shown that the risks in tertiary care, large PICUs were higher because patients had, in general, greater severity of illness. Although this concept is intui tive for most clinicians, the use of severity of illness models allows mathematical estimates of patient severity using physiologic and laboratory data and permits meaningful comparisons of the out comes across institutions, which may care for patient populations varying in complexity and acuity. At the individual physician level, quality measures may also be used for purposes of certification as part of the MOC process. In the past, specialty and subspecialty certification in medicine, including pediatrics, was largely based on demonstrating a core fund of knowledge by being successful on an examination. Further, no specific evidence of competency in actual practice needed to be demonstrated beyond successful completion of a training pro gram. However, significant variation in practice patterns among Implementation of Six Sigma P ro ce ss ( e. g. , E rr or r at es ) Significant variation Reduction in variation Mean performance Overall improvement with less variation Fig 4.7 Run or SPC chart with common cause and special cause vari ation. Individual QI Project Districts and Chapters National Implementation Science Micro System Meso
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System Macro System PDSA Cycle Leadership Education Researchto policy gaps Researchto program gapsImprovement Science Plan Study Act Do Fig. 4.8 Progressing from small scale to large scale quality improve ment. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 4 u Quality and Value in Healthcare for Children 41 physicians who are board certified has demonstrated how medi cal knowledge is important, but not sufficient, for the delivery of high quality care. In response, the American Board of Medical Spe cialties, including its member board, the American Board of Pedi atrics, implemented the MOC process in 2010. Within the MOC process, there is a specific requirement (Part IV) for the physician to demonstrate the assessment of their quality of care and imple mentation of improvement strategies as part of recertification in pediatrics and pediatric subspecialties. Lifelong learning and the translation of learning into practice are the basis for the MOC pro cess and an essential competency for physicians professionalism. This concept has also filtered in to graduate medical education, as demonstrated by the Accreditation Council for Graduate Medical Education requirement for residency programs to incorporate QI curriculum to ensure that systems based practice and QI are part of the overall competencies within accredited graduate medical train ing programs. IMPLICATIONS OF THE U.S. HEALTHCARE REFORM FOR QUALITY Regarding quality of healthcare for children, healthcare reform efforts had three key implications. First, expanded insurance cov erage optimized access and include expanded coverage for young adults to age 26 years. Second, various initiatives related to qual ity, safety, patient centered outcomes research, and innovation were implemented and funded. For example, the AHRQ funded a national effort to establish 7 centers of excellence through the Pediatric Quality Measurement Program (PQMP) to improve existing pediatric quality measures and create new measures that can be used by states and in a variety of other settings to evaluate quality of care for children. Third, reform advocated a paradigm shift in the existing model of healthcare delivery from vertical inte gration toward a model of horizontal integration. This has led to the creation and rapid growth of integrated delivery systems and risk sharing relationships through accountable care organizations (ACOs). Population health outcomes from these changes remain uncertain, although it appears healthcare cost inflation may have slowed somewhat. Another area of increasing emphasis is population health. This is important because it expands the traditional role of physicians to improve quality of care for individual patients to also improve the quality of care for larger populations. Populations can be defined by geographic constraints or diseasepatient condition. Efforts to link payment and reimbursement for care delivery by physicians and health systems are being increasingly tied to measurable improve ments in population health and demonstration of improved value. To achieve a meaningful improvement in population outcome, physician practices will need to embrace the emerging paradigm of
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practice transformation, whose many facets include the adoption of a medical home, the seamless connectivity across the primary care and subspecialty continuum, and a strong connection between the medical and social determinants of healthcare delivery. To implement successful practice transformation, health systems are increasingly striving to evolve to serve children across the entire range of the care continuum, including preventive and primary care and acute hospital care, and to partner with community organiza tions for enhancing social supports. In addition, new risk sharing payment models are being developed, such as value based purchas ing, which represent a financial risk sharing model across primary and subspecialty care and hospitals. Visit Elsevier eBooks at eBooks.Health.Elsevier.com for Bibliography. Table 4.2 National Organizations Involved in Pediatric Quality Improvement (QI) ORGANIZATION ROLE ACTIVITIES American Academy of Pediatrics (AAP) Represents more than 60,000 pediatricians and pediatric subspecialists worldwide Resources for QI to improve health for all children, best practices, advocacy, policy, research and practice, and medical home American Board of Pediatrics (ABP) Certifying board for pediatrics and pediatric subspecialties Certification policies and resources for activities such as Maintenance of Certification (MOC) American Medical Association (AMA) Physician member association Physician Consortium for Performance Improvement (PCPI)physician led initiative Childrens Hospital Association (CHA) Formerly the National Association of Childrens Hospitals and Related Institutions and the Child Health Corporation of America Databases, QI collaboratives, and policy Institute for Healthcare Improvement (IHI) QI organization for adult and pediatric care QI collaboratives, QI educational workshops and materials National Initiative for Child Health Quality (NICHQ) QI organization for pediatric care QI training, improvement networks The Joint Commission (TJC) Hospital accreditation organization Unannounced surveys to evaluate quality of care in hospitals National Committee for Quality Assurance (NCQA) QI organization Healthcare Effectiveness Data and Information Set (HEDIS) and quality measures for improvement National Quality Forum (NQF) Multidisciplinary group including healthcare providers, purchasers, consumers, and accrediting bodies Endorsing national quality measures, convening expert groups, and setting national priorities Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 42 Part I u The Field of Pediatrics Children may be harmed by the healthcare that aims to make them better. Such harms include central lineassociated bloodstream infections (CLA BSIs) and medication errors. In 1991 the Harvard Medical Practice Study reviewed adult medical records from New York State and found that adverse events occurred in an estimated 3.7 of hospitalizations. Most events gave rise to serious disability, and 13.6 led to death. The National Academy of Medicine esti mated that as many as 98,000 Americans per year die in the hospital from medical errors. Although fewer data are available for children, it is evident that chil dren experience substantial healthcare related harm. Nationally, hospi talized children experience approximately 1,700 CLA BSIs and 84,000 adverse drug events each year. Although the evidence is less robust, and not without controversy, substantial progress has been reported, particularly
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in healthcare associated conditions (HACs). Less strong epidemiologic estimates are available for adverse events in the ambu latory environment, but these events are likely more common than reported. The Solutions for Patient Safety (SPS) collaborative includes 145 childrens hospitals across the United States and Canada (http:www .solutionsforpatientsafety.org) and uses a learning network model to pursue the aim of eliminating serious harm across all childrens hospi tals. In addition, healthcare has recognized the high rates of healthcare worker injury and the critical role that the safety of healthcare provid ers plays in outcomes, burnout, and safe patient care. ERROR VS HARM Clinical leaders, improvers, and researchers often employ measures of error and harm to understand and improve safety, but the dif ferences between these two measures can lead to confusion. Errors occur when a member of the healthcare team does the wrong thing (error of commission) or fails to do the right thing (error of omis sion); errors of omission (e.g., not arriving at the right diagnosis) are considerably more difficult to measure. Harm, as defined by the Institute for Healthcare Improvement, is unintended physical injury resulting from or contributed to by medical care (including the absence of indicated medical treatment), that requires addi tional monitoring, treatment, or hospitalization, or that results in death. Most errors in healthcare do not lead to harm; harm may be both preventable and nonpreventable (Fig. 5.1). A physician may erroneously fail to add a decimal point in a medication order for an aminoglycoside antibiotic, ordering a dose of 25 mgkg rather than the intended dose of 2.5 mgkg. If this error is caught by the computerized order entry system or the pharmacist, this would be an error with no resultant harm. If this error was not caught and reached the patient, who suffered acute kidney injury, this would be preventable harm since evidence shows that pharmacist review can reduce the risk of these errors 10 fold. Alternatively, if a patient received a first lifetime dose of amoxicillin and had anaphylaxis requiring hospital admission, this harm would be considered non preventable since no valid predictive tests are available for antibi otic allergy. Furthermore, the concept of latent risk, independent of any actual error, is inherent in any system where patients can be harmed. Among errors that do not lead to harm, near misses that do not reach patientsor high risk situations that do not lead to harm because of good fortune or mitigationare important learn ing opportunities about safety threats. Several classification systems exist to rate harm severity, includ ing the National Coordinating Council for Medication Error Reporting and Prevention (NCC MERP) Index for medication related harm and the severity scales for all cause harm. Serious safety events (SSEs) are deviations from expected practice followed by death or severe harm. The SPS collaborative has SSE elimina tion as its primary goal. Sentinel events or never events, such as a wrong site surgery, are also targets of external reporting and for elimination through quality improvement (QI) initiatives
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(see Chapter 4). Increasingly, health systems are using a composite seri ous harm index, which combines a variety of preventable HACs (e.g., CLA BSIs) to examine system safety performance over time across various patient populations and sites of care. SAFETY FRAMEWORKS Safety frameworks are conceptual models and tools to help clini cians, improvers, and researchers understand the myriad contribu tors to safe healthcare and safety events. Healthcare is delivered in a complex system with many care providers and technologies, such as electronic health records and continuous physiologic moni tors. The Donabedian framework, which links structure, process, and outcome, can be a very useful tool. The Systems Engineering Initiative for Patient Safety (SEIPS) model, developed by human factors engineers, cognitive psychologists, and physicians, provides more detailed tools to understand the work system and the com plex interactions between people (including the patient and fam ily) and task work and technology and the environment. The SEIPS 3.0 model uses the concept of the patient journey to describe a patients interactions with multiple complex and separate care set tings over time. Other available safety frameworks include those from the Institute for Healthcare Improvement. The Swiss cheese model illustrates how multiple components of an organizations defenses prevent failures from leading to harm, but harm may occur when multiple defenses fail at the same time (Fig. 5.2). Traditionally, safety science and improvement have focused on identifying what went wrong (near misses, errors, and harm) and then tried to understand and improve the system of care that led to these events (Safety I framework). There is increasing focus on what goes right. This framework, called Safety II, brings focus on the much greater number of things that go right and how people act every day to create safety in complex and unpredictable systems. Safety II seeks to learn from people, the greatest source of system resilience, particularly in the midst of high levels of risk and stress, as often seen in healthcare. Chapter 5 Safety in Healthcare for Children Patrick W. Brady, Tina K. Sosa, and Jeffrey M. Simmons Error HarmNo harm Preventable harm Nonpreventable harm Fig. 5.1 Overlap between error and harm. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 5 u Safety in Healthcare for Children 43 IDENTIFYING AND ANALYZING HARM, ERRORS, AND LATENT THREATS Health systems use a toolbox of processes to discover, understand, and mitigate unsafe conditions. Incident Reporting Systems Many health systems and hospitals offer employees access to a system to report errors, harms, or near misses. Most frequently, these are anonymous so that healthcare workers feel safe to sub mit an event in which they may have been involved or when the harm involved someone in a position of authority. Ideally, these systems facilitate smooth and efficient entry of enough informa tion for further review but avoid excessive burden of time or cogni
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tive load on the reporter. Incident reporting systems likely work best in the presence of a strong safety culture and when employees have some confidence that the event will be reviewed and actions taken. The chief limitation of incident reporting systems is that incident reports dramatically underreport safety events. Thus other mechanisms must also be in place to learn about safety. Trigger tool systems use triggers, such as the need for an antidote to an opioid overdose or the transfer of a patient to higher level care, to facilitate targeted medical record review by trained nurses and physicians to elucidate any errors or system risks. Simulation Simulation is an excellent tool to better understand system and latent threats. High fidelity simulation, which involves the use of a manikin that can reproduce or mimic human anatomy and physiol ogy, can allow clinicians to practice technical skills such as intuba tion in a safe environment. Perhaps more importantly, simulation can help clinical teams improve nontechnical skills such as using closed loop communication and sharing a mental model (e.g., a team leader states, I believe this patient has septic shock. We are rapidly infusing fluids and giving antibiotics. Blood pressure is nor mal for age. What other thoughts does the team have?). It is often easier and more feasible to give feedback in a simulated scenario versus a real event. Low fidelity simulation does not require costly simulated patients and may have advantages in identifying latent threats in the hospital or clinic. For example, a simulated scenario on a medical surgical unit might identify that nurses do not know where to find a mask for continuous positive airway pressure (CPAP) to support an infant with respiratory failure. Identifyingand then mitigating this latent threat in a simulated environment is preferable to doing so in an acutely deteriorating child. Event Analysis Several types of event analysis, including root cause analysis, appar ent cause analysis, and common cause analysis, can help teams understandand later mitigatethe causes of adverse events. Each model has its own strengths and weaknesses. Root cause analy sis (RCA) is a robust and time intensive process to ascertain the most fundamental, or root, causes of a safety event. The Joint Com mission requires the use of RCA on sentinel events. Most health systems reserve this methodology primarily for sentinel events, because RCAs can take months to complete and require convening a multidisciplinary team of experts. The safety event and its anteced ents are reviewed in detail with a focus not on human behavior, but instead on systems, hazards, and latent errors. The RCA team works to go beyond the event (e.g., enteral formula feeds connected to and administered through a central line) to the proximal causes (e.g., feeding tube and intravenous tubing are visually identical and are easily attached) and root cause (e.g., organization lacks a system to assess human factors risks as new equipment is procured and put into practice). When root causes are identified and tied to robust improvement action plans,
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safety can be substantially improved (e.g., we will design feeding tubing and intravenous tubing to be distinct and incompatible). In addition to the time intensive nature of RCAs, hindsight bias is a risk and needs to be managed carefully by the team. Additional challenges with RCAs include the potential to overfit solutionsdesigning protocols or procedures that may have reduced the risk of the specific safety event reviewed but also introduce new problems and increase the probability of other safety threatsas well as difficulties in spreading solutions to different care areas that often have different needs, processes, and goals. Apparent cause analysis, common cause analysis, and failure modes and effects analysis are complementary learning methods. Apparent cause analysis is performed by a smaller multidisci plinary team to look primarily for proximal causes, making it fea sible for events that occur often (e.g., the wrong medication is sent from the pharmacy). Importantly, in each analysis the team works to determine how likely it is that such an event will occur in the Education Incorrect site on consent Swiss cheese model of adverse events First day at the new hospital New equipment never inserviced Band used instead of marking Video translation down had to use phone Family does not speak English H and P not verified with consent Adverse event wrong site surgery Each slice of cheese is a barrier to error propogation Holes represent failures in the barriers Training Policies Technology Communication Checklists Fig. 5.2 The Swiss cheese model of adverse events. (From Stein JE, Heiss K. The Swiss cheese model of adverse event occurrenceClosing the holes. Semin Pediatr Surg. 2015;246:278282.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 44 Part I u The Field of Pediatrics future and how widespread the proximate causes are in the micro system. Common cause analysis seeks to aggregate learning across multiple events. A similar common cause, such as poor handoff procedures, may lead to different safety events (e.g., a missed labo ratory check and a delayed diagnosis); common cause analysis aids leaders in determining this. Failure mode and effects analysis (FMEA) is a powerful tool that clinicians use to describe a process and identify failure modes, or ways in which each step might fail. A more robust and quantitative form of FMEA rates potential failure modes in three categories: probability of event occurring, its sever ity, and its ability to be detected. The product of these, called the risk priority number, can help a team identify which failure modes may lead to the greatest harm and thus which to target first. SAFETY CULTURE A broad and supportive safety culture likely drives both patient and employee safety outcomes. An organization with a mature safety culture fosters a culture of learning and treats errors as opportu nities to improve the system, rather than as the personal failures of individual clinicians. Just
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culture differentiates the mistakes and wrong decisions that a clinician makes commensurate with their training and experience from willful violations and gross or repeated patterns of negligence. A safety culture prioritizes clear and consistent communication and teamwork and aims to ease authority gradients (described later). Several tools are available to measure safety culture, including the Safety Attitudes Question naire and the Agency for Healthcare Research and Quality (AHRQ) surveys on Patient Safety Culture. A strong safety culture supports transfer of responsibility within disciplines at handoffs and across disciplines (e.g., when a nurse is calling a physician with a new concern). Structured communication tools such as the Situation Background Assessment Recommendation (SBAR) approach are valued in a safety culture, as are safety behaviors such as repeat back or write back, when a critical laboratory result is shared and repeated back by the receiving clinician. Authority gradients are quite real in healthcare. In a culture of safety, both junior and senior clinicians work together across disci plines to speak up when concerns are identified, to ask questions, and not to proceed if there is uncertainty about safe patient care. Health system leaders have a critical role in supporting this cul ture, orienting new employees to its importance, and stepping in if authority gradients or disruptive behaviors contribute to safety events or unsafe conditions. To address the adverse impact of the healthcare hierarchy on providing safe care, recent efforts have focused on psychologic safety. Psychologic safety is defined as the ability to raise concerns and ask questions without the fear of nega tive consequences for self image, status, or career. This concept is critical for multiple aspects of safety culture, including establishing a shared mental model, event reviews and debriefs, addressing pro fessionalism concerns, and effectively partnering with patients and families to pursue safety goals. RELIABILITY SCIENCE, HUMAN FACTORS ENGINEERING, AND HIGH RELIABILITY ORGANIZATIONS Reliability in healthcare is defined as the measurable capability of a process, procedure, or health service to perform its intended function in the required time under commonly occurring condi tions. Most processes in healthcare organizations currently perform at Level 1 reliability, meaning a success rate of only 8090. To achieve Level 2 performance (5 failures100 opportunities), pro cesses must be intentionally designed with tools and concepts based on the principles of human factors engineering and reliability science. These processes include creating intentional redundancy, such as independent verification on high risk medication dosing, and making the default action the desired action based on evidence, such as a default to an influenza vaccination for high risk patients with asthma. Performance at Level 3 (5 failures1,000 opportuni ties) requires a well designed system with low variation and coop erative relationships and a state of mindfulness, with attention to processes, structure, and their relationship to outcomes. Healthcare can learn important safety lessons from disciplines such as human factors engineering and cognitive psychology. Indus tries that better leverage learnings from these disciplinesand robustly identify and mitigate threats and use simulationinclude commercial aviation and nuclear
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power, termed high reliability organizations. These organizations achieve exemplary safety records under dynamic and high risk conditions through consis tent application of five tenets: (1) a preoccupation with failure surprises and errors are thought of as learning opportunities, and learnings spread quickly through the organization, (2) reluctance to simplify interpretationsserious safety events receive an RCA, (3) sensitivity to operationsproactive assessments and huddles target risks to patients and the organization, (4) a commitment to resil ienceerrors do not disable, and high risk, uncommon scenarios are negotiated, and (5) deference to expertiseleaders defer to frontline experts when their knowledge is required. SERIOUS HARM EVENTS AND HEALTHCARE ASSOCIATED CONDITIONS Substantial improvement in patient safety has occurred through improvement teams targeting serious harm events. The serious harm event rate is a composite metric that groups preventable HACs into one number (usually a rate per at risk patient days), so that an organization or collaborative can track progress on a variety of conditions with one metric and chart. Table 5.1 lists frequently targeted HACs. Commonalities among successful improvement teams targeting these HACs include multidisciplinary team mem bership, clear outcome definitions and measurement, learning sys tems around each HAC, and attention to both process and outcome measures. Many of the successes with CLA BSIs were associated with targeted improvements to reliably adhere to a line insertion bundle and a line maintenance bundle. Figure 5.3 illustrates coin cident improvements in process measures and outcomes measure in a hypothetical CLA BSI project. In this case, after improvement interventions targeted two process measures known to be impor tant in CLA BSI riskthe line insertion and the line maintenance bundlesthe QI team saw improvement in both measures and coincident reduction in CLA BSIs. A safety culture and experienced improvement teams are con sistent drivers of success. A learning network model, as used in SPS, is effective in bringing project teams together from different hospitals to discuss lessons learned and common barriers faced and negotiated. SAFETY OPPORTUNITIES AND GAPS In addition to HACs, several other safety events are the targets of active study and improvement. Unrecognized clinical deteriora tion in hospitalized children, diagnostic error, poor handoffs across multiple stakeholders, and alarmalert fatigue lead to substantial and preventable harm. There are also important considerations for improving safety in unique sites of care, including the surgical and ambulatory environments. Additionally, it is increasingly clear that patient safety improvements might be limited if the field does not also target improved occupational safety of those who provide care. Clinical Deterioration The deterioration of hospitalized patients is rarely a sudden and unpre dictable event; rather, it is often preceded by abnormal vital signs and concerns from patients, families, and clinicians. Rapid response sys tems are designed to detect deterioration and then deploy teams with critical care expertise to provide treatment or escalate care to an inten sive care unit (ICU). Although variation remains in how these teams Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For
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personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 5 u Safety in Healthcare for Children 45 are activated and staffed, all U.S. childrens hospitals have some version of a rapid response system. The initiation of rapid response teams is associated with a significant reduction in codes outside the ICU and in hospital mortality. Pediatric early warning scores (PEWS) are used in many large childrens hospitals to identify deteriorating patients by assigning scores based on the degree of abnormalities in different body systems. Different versions of PEWS are often employed, but all include scores driven by age based vital signs and nursing assessments in areas such as mental status and perfusion. Importantly, PEWS take these diverse exam elements and combine them into a single score, which when coupled with clear, expected actions (e.g., evaluation by physician at score of 5, evaluation by rapid response team at score of 7) may better detect deterioration and improve safety outcomes. PEWS are one method of improving a clinicians situation aware nessthe sense of what is going on around the clinician, the notion of what is important, and the anticipation of future consequences. Maintaining situation awareness can be challenging in dynamic, high risk environments such as healthcare. Work at several chil drens hospitals to improve situation awareness has been associated with sustained and significant reductions in unrecognized clinical deterioration. This improvement work first designed systematic and proactive identification of watcher patients, or those a nurse, physi cian, or patient family felt were close to the edge of deterioration. These high risk patients are discussed at multidisciplinary bedside huddles, and specific treatment plans and predictions are outlined. Concerns are more fully addressed through the rapid response team and at hospital wide safety huddles and safety rounds. To gain a better sense of organization safety and performance threats, many hospitals in the SPS collaborative employ a daily safety or opera tions brief, where leaders from a variety of service lines (e.g., inpa tient, pharmacy, perioperative care) can discuss unexpected events and rapidly develop solutions and follow up plans to mitigate emerging threats that cross disciplines. Event debriefs and reviews are particularly relevant for instances of clinical deterioration. They serve multiple purposes, including the emotional processing of an event, a discussion of the process of care and team performance, and the development of action plans to improve care in the future. The Pediatric Resuscitation Quality Collaborative (pediRES Q: https:www.pedires q.org) classifies debriefs into two types: (1) hot debriefs, which occur minutes to hours after the event and allow for emotional processing and educational discussion, and (2) cold debriefs, which occur days to weeks after the event and allow for a comprehensive, multidisciplinary review of all data and feedback. Current research and improvement efforts in this area are focused on developing successful frameworks to guide discussions and action plan development, such as formal processes for classify ing and reviewing cardiac arrest events in the pediatric ICU. Cardiopulmonary arrest rates outside of
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the ICU are useful metrics to evaluate the performance of rapid response systems in adult patients. Given that these events are quite rare in pediatrics, and increasingly so since the implementation of rapid response systems, the identification of valid, more frequent proximal metrics is a focus of research efforts. Table 5.2 describes proximal metrics to arrest and the types of code events used to identify risk factors for unrecognized deterioration and evaluate rapid response system effectiveness in pediatrics. Diagnostic Error Diagnostic error is recognized as an increasingly common and impactful event, with 1015 of diagnoses estimated to be incor rect. There are two systems of clinical decision making. System 1 is fast, instinctual, and largely unconscious. System 2 is slow, effortful, cognitive, and calculating. System 1 and its heuristics or biases allow for quickalmost automaticdecision making, often by associating new information with existing patterns or beliefs (e.g., that red object on the right side of the road is a stop sign; I should stop). However, system 1 thinking can be dangerous in diagnosis, particularly when new data are unconsciously made to fit the preconceived pattern and Table 5.1 Common Healthcare Associated Conditions (HACs) Targeted in Quality Improvement Efforts with Interventions HAC DEFINITION COST PER EVENT POTENTIALLY EFFECTIVE INTERVENTIONS Central lineassociated bloodstream infections Laboratory confirmed bloodstream infection with central line in place at time of or 48 hr before onset of event (details at https:www.cdc.govnhsn) 55,646 Line insurance bundle (e.g., handwashing, chlorhexidine scrub), maintenance bundle (catheter care, change dressing, discuss daily if catheter is needed) Catheter associated urinary tract infections Urinary tract infection where an indwelling urinary catheter was in place 2 days on day of event (details at https:www.cdc.govnhsn) 7,200 Protocols for reviewing and removing catheters daily, clear indications for inserting catheters, physician champions, audit and feedback of data Adverse drug events Harm associated with any dose of a drug (details at http:www.nccmerp.orgtypes medication errors) 3,659 Pharmacist review of medication order, computerized physician order entry, co ordering of laxatives in patients on opiates Peripheral IV infiltrates Moderate or serious harm (e.g., diminished pulses, 30 swelling) associated with a peripheral IV infiltrate (details at http:www.solutionsforpatientsafety.org) Hourly reviews of IV status, limitations on use of desiccants through peripheral IVs, remove IVs when no longer needed Pressure injuries Localized damage to skin andor underlying soft tissue usually over a bony prominence or related to a device (details at http:www.solutionsforpatientsafety.org) Screening of high risk patients (e.g., Braden Q Scale), regular turning of low mobility patients, regular inspection and skin care; specialized device padding Surgical site infections Infection of incision or deep tissue space after operative procedure (details at https:www.cdc.govnhsn) Surgical checklist, antimicrobial prophylaxis within 60 min before incision, preoperative baths, postoperative antibiotic redosing Venous thromboembolism Blood clot in deep vein, stratified as central lineassociated vs not (details at https:www.cdc.govnhsn) 27,686 Screening for high risk patients, removal of central line catheters when no longer needed, targeted prophylaxis Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024.
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For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 46 Part I u The Field of Pediatrics are not seen as disconfirming. Research in this area aims to better understand how well described cognitive biases (e.g., premature clo sure, availability bias) play out in clinical care and what system based strategies can mitigate their effects (Tables 5.3 to 5.5). There are ongo ing efforts to move clinicians from system 1 to system 2 thinking, such as being explicit on uncertainty (e.g., patients admitted from the emergency department ED as uncertain diagnosis) or using decision aids to prompt revisiting provisional diagnoses such as the diagnostic time out or team based (collective intelligence) think ing (Tables 5.6 and 5.7). Safety culture is critical to both the open acknowledgment of diagnostic uncertainty and the willingness to discuss and learn from diagnostic error when it occurs. The 2015 National Academy of Medicine (NAM) report entitled Improving Diagnosis in Health Care emphasized the centrality of 01 0 1 17 01 0 8 17 01 1 5 17 01 2 2 17 01 2 9 17 02 0 5 17 02 1 2 17 02 1 9 17 02 2 6 17 03 0 5 17 03 1 2 17 03 1 9 17 03 2 6 17 04 0 2 17 04 0 9 17 04 1 6 17 04 2 3 17 04 3 0 17 05 0 7 17 05 1 4 17 05 2 1 17 05 2 8 17 06 0 4 17 06 1 1 17 06 1 8 17 06 2 5 17 Central line bundle reliability Audit feedback of data Grand rounds on CLABS Insertion kits with every new line 100 80 60 40 20 0 W ee kl y av er ag e Week Insertion bundle weekly average Insertion bundle median Maintenance bundle weekly average Maintenance bundle median Goal (90) Central line associated bloodstream infections (CLASBSIs) Desired direction of change 30 25 20 15 10 5 0 C LA B S Is 1 ,0 00 li ne d ay s 01 0 1 17 (n 3 60 ) 01 1 5 17 (n 3 19 ) 01 2 9 17 (n 3 68 ) 02 1 2 17 (n 3 80 ) 02 2 6 17 (n 3 63 ) 03 1 2 17 (n 3 59 ) 03 2 6 17 (n 4 01 ) 04 0 9 17 (n 3 90 ) 04 2 3 17 (n 3 78 ) 05 0 7 17 (n 3 69 ) 05 2 1 17 (n 3 94 ) 06 0 4 17 (n 4 07 ) 06 1 8 17 (n 3 99 ) Week GoalCLABSIs1,000 linedays Median A B Fig. 5.3 Quality improvement interventions targeted process improvement in the A, line insertion bundle, where performance improved from 46 to 95, and B, line maintenance bundle, where performance improved from 13 to 66. Coincident with the improved bundle performance, the
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rate of CLA BSIs fell from 17.6 to 2.5 per 1,000 line days. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 5 u Safety in Healthcare for Children 47 communication to patients and families in the diagnostic pro cess while introducing a diagnostic process model with several important outcomes (Fig. 5.4). The diagnostic process occurs with iterative cycles of information gathering, its integration and inter pretation, and the formulation of a working diagnosis. The NAM report brought particular emphasis to the diagnostic team, which includes doctors and nurses in different practice contexts (e.g., the ED and primary care), as well as pharmacists, respiratory therapists, patients, and families. Strategies that aim to leverage the diagnostic team, as opposed to simply the cognition of busy individuals, may be particularly well poised to improved patient level and system diagnostic outcomes. HandoffsI PASS There is a growing evidence base on the consequences of poor hand offs and on complex interventions to improve handoffs and resultant safety outcomes. The best studied handoff is resident to resident shift handoff in teaching hospitals. Use of the I PASS mnemonic illness severity, patient summary, action list, situation awareness and contingency planning, and synthesis by receiverand the sur rounding educational quality improvement curriculum was asso ciated with a significant 23 reduction in medical errors and 30 reduction in adverse events in a nine hospital study. Related work has described improved communication by targeting ICU to floor, operating roomtoICU, and inpatient medical teamtoprimary care handoffs. AlarmAlert Fatigue Alarm fatigue, when a healthcare provider is subject to so many interruptions that a potentially relevant alarm is not heard, is also an area of active research and improvement. In the hospital, many physiologic monitor alarms occur each day (up to 400 per patient Table 5.2 Metrics to Identify Risk Factors for Unrecognized Deterioration Outside of the ICU and Evaluate Rapid Response System Performance METRIC REFERENCE DEFINITION STRENGTHS LIMITATIONS Unplanned ICU transfer Baker 2009 Reese 2015 All patients unexpectedly admitted to the ICU from a lower level of care in the hospital Transfer to the ICU from the inpatient ward that was not expected or previously coordinated (such as a planned ICU admission postoperatively) More common than code events and other proximal metrics to arrest High sensitivity for unrecognized deterioration Low specificity for unrecognized deterioration Often requires time intensive manual review of ICU transfers Site specific parameters, including definition adjustments, and the acuity of patients cared for outside of the ICU Critical deterioration event Bonafide 2012 Noninvasive ventilation, intubation, or vasopressor initiation within 12 hr after ICU transfer More common than emergency transfers and code events High sensitivity for unrecognized deterioration Increased specificity as compared with unplanned ICU transfers Objective criteria facilitating use in multicenter studies and collaboratives Less specific than emergency transfers; may include patients with promptly recognized deterioration Often requires time intensive manual review
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of ICU transfers Emergency transfer Brady 2013 Intubation, inotropic support, or 3 or more fluid boluses in the first hour after arrival or before ICU transfer More common than code events High specificity for unrecognized deterioration Objective criteria facilitating use in multicenter studies and collaboratives Feasible to track in near real time Less common than critical deterioration events and unplanned ICU transfers Significant clinical deterioration event Parshuram 2018 Death, cardiopulmonary resuscitation, tracheal intubation, vasoactive medications, or 60 mL kg fluid boluses in the 12 hr before transfer, or death, cardiopulmonary resuscitation, tracheal intubation, or ECMO initiation within 1 hr after ICU transfer More common than code events Objective criteria facilitating use in multicenter studies and collaboratives Complex definition not inclusive of all interventions and outcomes associated with acute deterioration events Often requires time intensive manual review of ICU transfers Code event: Cardiopulmonary arrests (CPAs) Childrens Hospital Association Pulselessness or pulse with inadequate perfusion necessitating chest compressions andor electric shock High specificity for unrecognized deterioration Objective criteria facilitating use in multicenter studies and collaboratives Feasible to track in near real time Less common than proximal metrics to arrest Low sensitivity for inadequately recognized, subacute cases of deterioration Code event: Acute respiratory compromise (ARC) Childrens Hospital Association Respiratory insufficiency with bag valve mask or invasive airway interventions, followed by a transfer to a higher level of care for sustained airway support High specificity for unrecognized deterioration Objective criteria facilitating use in multicenter studies and collaboratives Feasible to track in near real time Less common than proximal metrics to arrest Low sensitivity for inadequately recognized, subacute cases of deterioration Not inclusive of all nonrespiratory etiologies of deterioration Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 48 Part I u The Field of Pediatrics Table 5.3 Cognitive Biases Related to Heuristic Failure BIASES DEFINITION Anchoring Locking into a diagnosis based on initial presenting features, failing to adjust diagnostic impressions when new information becomes available Confirmation bias Looking for and accepting only evidence that confirms a diagnostic impression, rejecting or not seeking contradictory evidence Diagnostic momentum Perpetuating a diagnostic label over time, usually by multiple providers both within and across healthcare systems, despite the label being incomplete or inaccurate Expertise biasyin yang out Believing that a patient who has already undergone an extensive evaluation will have nothing more to gain from further investigations, despite the possibility that the disease process or diagnostic techniques may have evolved so as to allow for appropriate diagnosis Overconfidence bias Believing one knows more than one does, acting on incomplete information or hunches, and prioritizing opinion or authority, as opposed to evidence Premature closure Accepting the first plausible diagnosis before obtaining confirmatory evidence or considering all available evidence: When the diagnosis is made, thinking stops Unpacking principle Failing to explore primary evidence or data in its entirety and subsequently failing to uncover important facts
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or findings, such as accepting a biopsy report or imaging study report without reviewing the actual specimen or image; especially important in undiagnosed and rare diseases From Bordini BJ, Stephany A, Kliegman R. Overcoming diagnostic errors in medical practice. J Pediatr. 2017;185:1925, Table I. Table 5.4 Cognitive Biases Related to Errors of Attribution BIASES DEFINITION Affective bias Allowing emotions to interfere with a diagnosis, either positively or negatively; dislikes of patient types (frequent flyers). Appeal to authority Deferring to authoritative recommendations from senior, supervising, or expert clinicians, independent of the evidentiary support for such recommendations. Ascertainment bias Maintaining preconceived expectations based on patient or disease stereotypes. Attribution error Placing undue importance on the perceived internal characteristics or motivations of others, whether they are the patient, the patients family, or other members of the evaluation team. Countertransference Being influenced by positive or negative subjective feelings toward a specific patient. Outcome bias Minimizing or overemphasizing the significance of a finding or result, often based on subjective feelings about a patient, a desired outcome, or personal confidence in ones own clinical skills. The use of slightly to describe abnormal results. Psych out bias Maintaining biases about people with presumed mental illness. From Bordini BJ, Stephany A, Kliegman R. Overcoming diagnostic errors in medical practice. J Pediatr. 2017;185:1925, Table II. Table 5.5 Cognitive Biases Related to Errors of Context BIASES DEFINITION Availability bias Basing decisions on the most recent patient with similar symptoms, preferentially recalling recent and more common diseases. Base rate neglect Prioritizing specific information (e.g., a laboratory value) pertaining to a case while ignoring general base rate information about the prevalence of disease in populations (pretest probability). Framing effect Being influenced by how or by whom a problem is described or by the context in which the evaluation takes place. Frequency bias Believing that common things happen commonly and usually are benign in general practice. Hindsight bias Reinforcing diagnostic errors once a diagnosis is discovered despite these errors. May lead to a clinician overestimating the efficacy of his or her clinical reasoning and may reinforce ineffective techniques. Posterior probability error Considering the likelihood of a particular diagnosis in light of a patients chronic illness. New headaches in a patient with a history of migraines may in fact be a tumor. Representative bias Basing decisions on an expected typical presentation. Not effective for atypical presentations. Overemphasis on disease diagnostic criteria or classic presentations. Looks like a duck, quacks like a duck. Suttons slip Ignoring alternative explanations for obvious diagnoses (Suttons law is that one should first consider the obvious). Thinking in silo Restricting diagnostic considerations to a particular specialty or organ system. Each discipline has a set of diseases within its comfort zone, which reduces diagnostic flexibility or team based communication. Zebra retreat Lacking conviction to pursue rare disorders even when suggested by evidence. From Bordini BJ, Stephany A, Kliegman R. Overcoming diagnostic errors in medical practice. J Pediatr. 2017;185:1925, Table III. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from
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ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 5 u Safety in Healthcare for Children 49 in some environments), and nurses exposed to a high volume of alarms respond more slowly to them. Interventions currently being studied include removing monitors from patients unlikely to ben efit from them, designing smart alarms that alert only when cer tain scenarios occur (e.g., bradycardia in the context of hypoxia), and using advanced communication technology to safely escalate true alarms while ignoring nonactionable alarms. Alert fatigue is related to alarm fatigue but refers to clinicians not processing an alert, such as a medication interaction from the electronic health record, when receiving a large burden of alerts often regarded as nonactionable. Surgical Safety Initially, in response to the problem of wrong patient or wrong site surgeries, perioperative leaders developed a set of safety strategies often termed the tenets of surgical safety, which are endorsed by the World Health Organization (https:www.who.intpatientsafetysafe surgeryen). The tenets are implemented as several discrete check lists at key points, or time outs, in the workflow around a proce dure or surgery. Several studies have demonstrated reduced harm to patients, and surgical checklists are adopted widely throughout sur gical and procedural environments. Typically, checklists are used at three key times during a procedure: before induction of anesthesia, before skin incision or insertion of a device into any body cavity or orifice, and before a patient leaves the procedural area or operating room. Key aspects of the impact of this approach include multidis ciplinary active participation, visual display of the checklist or other key tools as references, and attention to hierarchies and team based communication. An evolving area of surgical and procedural safety is the use of simulation and video based procedure review to improve surgical technique and perioperative team function and to identify latent threats. Ambulatory Safety Adverse drug events and medication dosing errors are the best studied safety events in the outpatient environment. A study of children receiving chemotherapy used direct observation by a trained nurse at home and found approximately 70 errors per 100 patients, many of which were serious or significant. Families often make dosing errors Table 5.6 Diagnostic Time Out Identify the clinical issues, dilemmas, or concerns needing a time out. Remove all previous diagnoses and reexamine all laboratory studies, imaging, and other information, including the history and physical exam. Did we consider the risks of heuristic (intuitive) thinking? Do we have biases? What are the diseases we must not miss? From Bordini BJ, Basel D. Disease mimics: An approach to undiagnosed diseases. In: Kliegman RM, Toth H, Bordini BJ, Basel D. (eds). Nelson Pediatric Symptom Based Diagnosis. 2nd ed. Philadelphia: Elsevier; 2023: Table 1.6. Table 5.7 Solutions to Avoid Diagnostic Errors 1. Enhancing foundational knowledge in medical education Teach symptoms and their differential pathophysiology, not just diseases. Emphasize red flags and must not miss diagnoses. 2. Minimizing errors related to heuristic
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failure Build understanding of system 1 and system 2 thought processes and the risks of heuristic failure. Actively model and encourage counterfactual reasoning and hypothesis generation to enhance system 2 skills. 3. Mitigating errors of attribution Increase awareness of biases toward specific patients by promoting self reflection. Use a team based approach and diagnostic strategies that actively dispel biases. 4. Avoiding errors of context Solicit input across a variety of specialties when appropriate. Consciously acknowledge the risk of thinking in silo and actively seek explanations outside of ones specialty. 5. Optimizing data gathering, analysis, and hypothesis generation Develop differential diagnoses based on pathophysiology; consider alternatives and competing options. Realize that diagnostic criteria for certain diseases do not account for atypical disease manifestations. Rely on objective individual data, not just disease prevalence rates, when considering the pretest likelihood of a particular diagnosis. Avoid diagnostic momentum and question accumulated diagnostic labels, regardless of who applied the label. 6. Improving hypothesis testing Know the limitations of laboratory tests (i.e., false positives and negatives). Do not be so quick to rule out a diagnosis: consider the posttest likelihood of a disease in terms of a probabilistic analysis that applies specifically to the patient. Acknowledge that the initial working diagnosis may not always be the final diagnosis. Rely on evidence based data and avoid authority or overconfidence based errors. Recognize that a diagnosis is an iterative and interactive process that should not be bounded by premature closure or anchoring. Be open to both confirmatory and nonconfirmatory data. Both know and accept what you do not know. 7. Critical solutions for complex and undiagnosed and rare disease patients Maintain healthy skepticism, especially with patients who come prediagnosed. Analyze historical diagnostic data methodically and thoroughly and unpack all data completely. Examine actual studies, such as tissue specimens and imaging investigations, and do not rely on written reports. Question the working diagnosis when findings or the clinical course does not fit. Realize that patients can have more than one disease process. Incorporate all data and avoid minimizing the significance of abnormal results. Do not ignore contradictory clinical, laboratory, or imaging data. Never say never or it cannot be. Use a systematic team based approach to enhance debiasing, broaden the collective knowledge base, and minimize context related errors. Be aware that patients with undiagnosed and rare diseases may have an atypical or rare manifestation of a recognizable common disease or may have a rare disease. Use extensive literature review and search strategies based on the patients phenotype and individual findings and hypotheses. From Bordini BJ, Stephany A, Kliegman R. Overcoming diagnostic errors in medical practice. J Pediatr. 2017;185:1925, Table V. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 50 Part I u The Field of Pediatrics in administering liquid medications, particularly when using kitchen spoons rather than dosing syringes. A health literacyinformed pic
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togram reduces the rates of these errors Additional ambulatory safety threats include delays in diagnosis or treatment caused by mishandling of laboratory or imaging results and failures in care coordination. Occupational Safety The provision of healthcare can be a dangerous profession, with injury rates that surpass those of coal miners. The magnitude of this challenge and efforts to improve workplace safety have gained considerable attention over the past several years. Nurses and phy sicians still typically view a needlestick injury or back strain from lifting a patient as simply part of the job. A culture of safety should include employee safety, and health systems should have mecha nisms for employees to report injuries, near misses, and threats. Focused improvement efforts might include the roll out of safer needle systems, education on safe processes, and easy access to lifts for larger children with limited mobility. Violence and patient interaction injuries, often from children with psychiatric disease or developmental disabilities, are a growing source of harm to clini cians. Education for clinicians on de escalation techniques, behav ioral specialist engagement in bedside care, and implementation of standardized behavior response teams are active areas of improve ment and study as we consider how to best support patients with behavioral needs admitted to the medical unit. EMERGING AREAS OF SAFETY RESEARCH AND IMPROVEMENT Safe and Equitable Care The authors of Crossing the Quality Chasm stated that healthcare should target 6 aims for improvement: safety, effectiveness, patient centeredness, timeliness, efficiency, and equity. These aims are not independent, and we are just beginning to critically examine the relationship between safety and equity. Existing evidence suggests that there are disparities in safety for several groups of pediatric patients, including Black and Latino children, for children whose families do not primarily speak English, and for children on public insurance. In pediatric surgery, one study found that Black chil dren had over three times the odds of dying in the postoperative period, nearly 20 relative greater odds of postoperative complica tions, and 7 relative higher odds of developing serious adverse events as compared to White children, even while controlling for multiple variables, including racial variation in preoperative mor bidity. A systematic review of the evidence in pediatric appendi citis found that social, racial, and economic inequities exist in the rate of misdiagnosis, laparoscopic versus open approach, length of stay, and appendiceal perforation rate. In pediatric severe sepsis, a recent large retrospective study found evidence of an increased odds of death for Black children as compared to White children, particularly in the Western and Southern United States. This study also described longer hospital stays for Hispanic and Black chil dren as compared with White children. Disparities also affect adverse events for hospitalized children, with one multicenter study reporting that hospitalized Latino children experience higher rates of adverse events as compared to non Latino White children, and publicly insured children experience higher rates of preventable adverse events as compared to those who are privately insured. The Institute for Healthcare Improvement notes
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that there can be no quality without equity, and the field of pediatric patient safety is increasingly focused on health equity as a critical and essential out come measure. Learning from Patient and Family Partnerships Another important area of current and growing research involves how healthcare providers can partner with patients and families to improve the safety of care. Families often identify a wide number of errors and safety events that clinicians fail to report. More important than fami lies simply reporting mistakes are early efforts to engage families more broadly and deeply to co produce healthcare that is efficient, effective, and safe. This is particularly important for the growing population of children with complex chronic disease, for whom family caregivers are critical in identifying deviations from baseline in their children. Visit Elsevier eBooks at eBooks.Health.Elsevier.com for Bibliography. Accurate, timely diagnoses Diagnostic errors and near misses Patient outcomes Outcomes The work system Diagnostic team members Tasks Technologies and tools Organization Physical environment External environment Patient experiences a health problem Time Patient engages with health care system Communication of the diagnosis The diagnostic process Treatment System outcomes Effects on quality, safety, cost, efficiency, morale, public confidence in the health care system Learning from diagnostic errors, near misses, and accurate, timely diagnoses Information integration and interpretation Inform ation gathering W or ki ng di ag no si s Fig. 5.4 Outcomes from the diagnostic process. (From National Academies of Sciences, Engineering, and Medicine. 2015. Improving Diagnosis in Health Care https:doi.org10.1722621794.) Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 6 u Ethics in Pediatric Care 51 Pediatric ethics is the branch of bioethics that analyzes moral aspects of decisions made relating to the healthcare of children. In general terms, the autonomy driven framework of adult medical ethics is replaced by a beneficent paternalism in pediatrics. Pediatric ethics is distinctive because the pediatric clinician has an independent fiduciary obligation to act in a younger childs best interest that takes moral precedence over the wishes of the childs parent(s). For older children, the concept of assent suggests that the voice of the patient must be heard. These fac tors create the possibility of conflict among child, parent, and clinician. The approach to the ethical issues that arise in pediatric practice must include respect for parental responsibility and authority balanced with a childs developing capacity and autonomy. Heterogeneity of social, cultural, and religious views about the role of children adds complexity. Additional features of ethical decision making include nonmalefi cence (do no harm) and justice (treating patients with the same condi tion equally). ASSENT AND PARENTAL PERMISSION The doctrine of informed consent has limited direct application to children and adolescents who lack decisional capacity. The capac ity for informed decision making in healthcare involves the ability to understand and communicate, to reason and deliberate, and to analyze conflicting elements
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of a decision using a set of personal values. The age at which a competent patient may legally exercise voluntary and informed consent for medical care varies from state to state, and there may be exceptions related to specific conditions (sexually transmitted infections, family planning, drug or alcohol abuse). In contrast to decisions about ones own care, a parents right to direct a childs medical care is more limited. For this reason, the term paren tal consent is misleading. The concept of parental permission (rather than consent) reflects a surrogate or proxy decision made by a parent on behalf of a child. It is constrained by the childs best interest, even if this places the clinician in conflict with the parent. In any given instance, the decision of what is or is not in a childs best interest may be difficult, especially given the diverse views of acceptable child rearing and child welfare. Parents are (and should be) granted wide discretion in raising their children. In cases involving a substantial risk of harm, the moral focus should be on avoiding or preventing harm to the child, not on a parental right to decide. Although the term best interests may be too high of a threshold requirement, a minimum standard of basic interests is ethically obligatory. Respect for children must account for both a childs vulnerability and developing capacity. This respect encompasses both the protective role of parental permission and the developmental role of child assent (the childs affirmative agreement). Understanding the concept of assent is one of the major conceptual challenges in pediatric ethics. The dissent (or disagreement) of a child is the opposite of assent and is also mor ally relevant. Pediatric ethics requires clinicians and parents to over ride a childs dissent when a proposed intervention is essential to the childs welfare. Otherwise, assent should be solicited and dissent hon ored. In seeking younger childrens assent, a clinician should help them understand their condition, tell them what they can expect, assess their understanding and whether they feel pressured to assent, and solicit their willingness to proceed. All efforts must be made to delineate situ ations in which the test or procedure will be done regardless of the childs assentdissent, and in such cases the charade of soliciting assent should be avoided. There is an important distinction between soliciting assent and respectfully informing a child that a test or procedure will take place regardless of the childs decision. Optimally, an educational process can transpire (if time allows) to gain the trust and assent of the child patient. When this cannot occur, pediatric ethics requires that clinicians apologize to a child for acting to override dissent. Older children or adolescents (18 years) may have the cognitive and emotional capacity to participate fully in healthcare decisions. If so, the adolescent should be provided with the same information given to an adult patient. In such situations the patient may be able to provide informed consent ethically but not legally. The adolescents parent(s)
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remain in a guiding and protective role. The process of communica tion and negotiation will be more complex should disagreement arise between the parent and adolescent. Pediatricians can be effective inter cessors when these situations arise, making use of communication skills in a respectful way that uses an ethical framework. TREATMENT OF CRITICALLY ILL CHILDREN Infants, children, and adolescents who become critically ill may recover fully, may die, or may survive with new or increased limitations of function. Uncertainty about outcomes can make planning goals of care difficult or, if misunderstandings among patient, families, and medical staff occur, may drive conflict over treatment proposals. Ethical issues that arise during critical illness include balancing benefits, burdens, and harms of therapy in the face of uncertainty; maintaining a helpful degree of transparency and communication about medical standards of care at an institution; understanding and respecting religious and cultural differences that affect requests for or refusal of treatments; defining limits of therapy based on assessments of medical futility; rec ognizing the moral equivalence of not starting an ineffective treatment and stopping (although the two acts may seem very different to families and even to clinicians); and controversies such as withholding medi cally administered nutrition and hydration. Transitioning the Goals of Care Most acutely ill children who die in an intensive care unit do so after a deci sion has been made to forgo or withdraw life sustaining medical treat ment (LSMT), and the same may apply in the chronically ill population. LSMT is justified when the anticipated benefit outweighs the burdens to the patient; it is important to note that the availability of technology does not in and of itself obligate its use. Decisions to use, limit, or withdraw LSMT should be made after careful consideration of all pertinent factors recognizable by both family and medical staff, including medical likeli hood of particular outcomes, burdens on the patient and family, religious and cultural decision making frameworks, and input by the patient when possible (Table 6.1). Although fear of legal repercussions may sometimes drive treatment and medical advice, ultimately decisions should be based on what is thought to be best for the patient. The concept of futility has been used to support unilateral forgoing of LSMT against the wishes of patients and families by holding that clinicians should not provide futile (or useless) interventions. If medical futility is defined narrowly as the impossibility of achieving a desired physiologic outcome, forgoing a particular intervention is ethically justified. However, this approach may not adequately engage professionals and families in understanding facts and values that might allow the same therapy to reach other goals and may leave medical and family stakeholders in permanent conflict. Guidance from critical care groups recommend restricting use of the word futility to situations of strict physiologic futility, and instead use process guidelines to evaluate and manage situations of potentially inap propriate treatment. If agreement cannot be reached through clear and compassionate communication efforts, further input should be sought from an ethics consultant
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or committee. Communication about life threatening or life altering illness is chal lenging and requires skills learned through both modeling and practice. These skills include choosing a setting conducive to what may become one or more long conversations; listening carefully to childrens and families hopes, fears, understanding, and expectations; explaining medical infor mation and uncertainties simply and clearly without complicated terms and concepts; conveying concern and openness to discussion; and being willing to share the burdens of decision making with families by giving clear recommendations. Discussing difficult topics with children requires an understanding of child development and can be aided by professionals such as child psychologists or child life specialists. Such conversations and their outcomes have a major impact on the future care of the patient, on Chapter 6 Ethics in Pediatric Care Eric Kodish and Bryan A. Sisk Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 52 Part I u The Field of Pediatrics families, and on medical staff. For this reason, ongoing evaluation of goals and communication about them is needed with families and within com plex medical teams as the course of the illness unfolds. Experts recognize that good medical care involves providing for com munication, symptom management, and a range of supportive services from the onset of acute illness. In this way, if an illness proves to be life limiting despite intensive therapies, the elements of palliative care are already in place. This concept has had difficulty gaining traction, espe cially in critical care settings, because of the mistaken conflation of broadly defined palliative measures with hospice care. Palliative care interven tions focus on the relief of symptoms and conditions that may detract from quality of life regardless of the impact on a childs underlying dis ease process, and as such are important whether care is focused on cure or on transitioning to end of life care (see Chapter 8). Some interventions regarded as life sustaining, such as chemotherapy, may be ethically accept able in the end of life setting if their use decreases pain and suffering. Withholding and Withdrawing Life Sustaining Treatment Limitation of interventions or withdrawal of existing therapies is ethi cally permissible if congruent with a plan of care focused on comfort and improved quality at the end of life rather than cure. The prevail ing view in Western medical ethics is that there is no moral distinc tion between withholding or withdrawing interventions that are not medically indicated (see Table 6.1). Uncertainty in predicting a childs response to treatment may drive the initiation and continuation of interventions that are subsequently determined to be no longer aligned with the goals of care. It is important to continually evaluate the results of these treatments and the evolution of the illness to recognize whether such interventions continue to be the best medical and moral choices. Maintaining the focus on
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the child rather than on the interests of par ents or medical staff should be the primary driver of decision making. The decision about whether to attempt cardiopulmonary resuscitation (CPR) may become an issue to discuss with parents of children living with life threatening or terminal conditions. All elements of end of life care approaches, including resuscitation status, should be supportive of agreed on goals of care. It is imperative that decisions and plans are effectively com municated to all caregivers in order to avoid denying medically effective interventions and measures to ensure comfort. Orders about resuscitation status should clarify the plan regarding intubation and mechanical venti lation, the use of cardiac medications, chest compressions, cardioversion, blood products, antibiotics, and dialysis. Because goals of care may change over time, a medical order regarding resuscitation is not irrevocable. Cli nicians may assume that the absence of a do not attempt resuscitation (DNAR) order obligates them to perform CPR. This action may not be ethically obligatory if resuscitative efforts will not achieve the desired phys iologic end point. In all cases, treatments should be tailored to the childs clinical condition, balancing benefits and burdens to the patient. Resus citation should not be performed solely to mollify parental distress at the tragic time of the loss of their child. Artificial Hydration and Nutrition Issues surrounding withholding or withdrawing artificial hydration and nutrition are controversial, and interpretations are affected by parental reli gious and medical beliefs. Any adult or child who is fully dependent on the care of others will die as a result of not receiving hydration and nutrition. Case law has supported the withholding of artificially administered nutri tion and hydration in the setting of adult vegetative or permanently uncon scious patients who can be shown to have previously expressed a wish not to be maintained in such a state. This requires a valid advance directive or for a surrogate decision maker to speak on behalf of the patients known wishes. Because infants and many children have not reached a develop mental stage in which such discussions would have been possible, deci sions about stopping artificially administered nutrition and hydration as a limitation of treatment are more problematic. These decisions should be based on what families and caregivers decide best support comfort. In the child who is imminently dying, unaware of hunger, does not tolerate enteral feedings, and in whom family and staff agree that IV nutrition and hydration only prolong the dying process, it may be ethically permissible to withhold or withdraw these treatments based on a benefit burden analysis. The Doctrine of Double Effect Treatment decisions at the end of life may include limitations of certain LSMT or may involve the use of analgesic or sedative medications that some fear may shorten life, thereby causing death. The doctrine of double effect (DDE) holds that an action with both good and bad effects is morally justifiable if the good effect is the only one intended and the bad effect is foreseen
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and accepted, but not desired. In pediatrics, DDE is most com monly applied in end of life cases when upward titration of medication (opiates) necessary to relieve pain, anxiety, or air hunger can be expected to result in a degree of respiratory depression. In such cases, meeting a clinicians obligation to relieve suffering is the intended effect, and this Table 6.1 Approach to Termination of Medical Treatments for Adults (18 yr) and Children CONSIDERATION DISCUSSION Is there a legal right to refuse medical interventions? YES. The U.S. Supreme Court declared that competent patients 18 yr have a constitutionally protected right to refuse unwanted medical treatments. NO. In neonates and children, if the treatment is in the best interest of the child, the family cannot refuse beneficial treatments (see later). What interventions can be legally and ethically terminated? Any and all interventions (including respirators, antibiotics, pacemakers, ECMO, intravenous or enteral nutrition and hydration) can be legally and ethically terminated. Is there a difference between withholding life sustaining interventions and withdrawing them? NO. The consensus is that there is no legal or ethical difference between withholding and withdrawing medical interventions. Stopping a treatment once begun is just as ethical as never having started it. Whose view about terminating life sustaining interventions prevails if there is a conflict between the family and physician? If continued treatment is not beneficial (futile), there is no obligation to continue such care. At times, involvement of an ethics committee or the courts is necessary. In most circumstances, the parents agree with the healthcare team (shared decision making). Are advance care directives legally enforceable? YES. As a clear expression of the patients wishes, they are a constitutionally protected method for patients to exercise their right to refuse medical treatments. In almost all states, clear and explicit oral statements are legally and ethically sufficient for decisions about withholding or withdrawing medical interventions. This is true for patients over 18 yr old. Mature, competent adolescents (16 yr) may provide assent and consent to refuse care, but this is not universally accepted. ECMO, Extracorporeal membrane oxygenation. Modified from Emanuel EJ. Bioethics in the practice of medicine. In: Goldman L, Schafer AI (eds). Goldman Cecil Medicine. 26th ed. Philadelphia: Elsevier; 2020: Table 2.2. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. Chapter 6 u Ethics in Pediatric Care 53 obligation to the patient outweighs the acknowledged but unavoidable side effect. Choosing medications that adequately relieve symptoms with mini mal adverse effects would be ethically preferable, but absent these options, the obligation to provide comfort at the end of life outweighs the foresee able occurrence of unavoidable side effects. Hastening death as a primary intention is not considered to be morally acceptable. Providing pain medication guided by the DDE should not be con fused with active euthanasia. The distinction is clear: In active euthanasia, causing death is
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chosen as a means of relieving the symptoms that cause suffering. Under DDE, adequate management of pain, anxiety, or air hunger is recognized as an obligation to dying patients and is provided by careful titration of medications in response to symptoms. If death occurs sooner as a result, this is accepted. In both cases the patient dies, and in both cases suffering ends, but immediate death is the intended consequence only in the case of eutha nasia. Codes of ethics and legislation in many states support the obliga tion to provide pain and symptom relief at the end of life, even if this requires increasing doses of medication. NEONATAL ETHICS As neonatal care has evolved, the limits of viability of extremely premature infants are continuing to change. This introduces new elements of uncer tainty to decision making, often in emotionally fraught circumstances such as a precipitous premature delivery. In cases of uncertain prognosis, parental desires should determine the decision making, while clinicians should help parents recognize when treatments are inappropriate; this should result in a shared decision making approach to developing plans of care. The federal Child Abuse Prevention and Treatment Act of 1984 (CAPTA), which became known as Baby Doe Regulations, required state child protective services agencies to develop and implement mechanisms to report to a specific government agency treatment that the reporter believed was withheld from infants on the basis of disability. Exceptions were (1) an infant is chroni cally and irreversibly comatose; (2) if providing a treatment would merely prolong dying, would not be effective in ameliorating or correcting all the infants life threatening conditions, or would be futile in terms of the infants survival; and (3) if the treatment would be virtually futile and inhumane. This legislation pertains only to infants and is intended to prevent discrimination on the basis of disability alone. One consequence of the legislation was a shift from potential undertreatment to widespread overtreatment (LSMT that does not serve the interests of the child) of severely disabled new borns. As parental involvement in decision making is again taking a more central role, and as palliative care approaches in infants have become more available and skilled, balanced approaches to valuing the lives of disabled infants should be considered. Understanding institutional, regional, state, and national regulations related to care of infants is important in order to practice within regulatory frame works while respecting the values of the family and pursuing the interests of the patient. Active euthanasia of severely suffering disabled newborns has been legal ized in The Netherlands and Belgium, using protocols designed to mini mize the risk of abuse and maximize transparency. It is currently illegal in the United States, and although controversy surrounds the subject, the predominant view is that active euthanasia is not ethically acceptable in the care of infants and children, instead favoring palliative treatment (including pain management) and limiting escalation of treatment (see Chapter 8). DECLARING DEATH AND ORGAN DONATION Donation of solid organs necessary to support life can
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occur after a patient is declared dead based on either irreversible cessation of function of the brain and brainstem (death by neurologic criteria, or brain death) or a pre determined period of cardiac asystole called circulatory death (see Chapter 83). To avoid a potential conflict of interest by surgeons or others caring for a potential organ recipient, the request for organ donation should be separated from the clinical discussion of either brain death or withdrawal of LSMT. Although clinicians may be the first to enter discussion about death and organ donation with family members during conversations about outcomes and options, detailed discussion of organ donation should be done by other individuals who are specifically trained for this purpose. This decoupling of clinical decision making from a request for organ donation by trained individuals, perhaps by providing families with expert information without a perceived conflict of interest, has been associated with improved donation rates. Death by Neurologic Criteria Death by neurologic criteria (DNC), commonly referred to as brain death (BD), may be difficult for families to understand when the child appears to be breathing (although on a ventilator), pink, and warm to the touch and when language such as life support is used at the bedside by staff. Studies also document clinician misunderstanding of the diagnosis of BDDNC. For these reasons, strict criteria adhering to nationally accepted guide lines must be used to determine when irreversible cessation of brain and brainstem function (coma, brainstem areflexia, apnea) has occurred and adequately document these findings (see Chapter 83). RELIGIOUS OR CULTURAL OBJECTIONS TO TREATMENT Differences in religious beliefs or cultural norms may lead to conflict among patients, families, and medical caregivers over the approach to medical care. Pediatricians need to remain sensitive to and maintain an attitude of respect for these differences yet recognize that an independent obligation exists to provide safe and effective medical treatment to the child. An adult with decision making capacity is recognized as having the right to refuse treatment on religious or cultural grounds, but children who have not yet developed this capacity are considered a vulnerable popula tion with a right to treatment. In situations that threaten the life of the child or that may result in substantial harm, legal intervention should be sought if reasonable efforts toward collaborative decision making are ineffective. If a childs life is imminently threatened, medical intervention is ethically justified despite parental objections. PEDIATRIC ETHICS COMMITTEES AND ETHICS CONSULTATION Most hospitals have institutional ethics committees to assist with policy development, education, and case consultation. When these committees serve institutions caring for children, they may be referred to as pediat ric ethics committees. Because of the important differences in approach between adult and pediatric ethics, member expertise on this committee should include those with special insight into the unique ethical issues arising in the care of children. Such committees generally provide eth ics consultation advice without mandating action or being determina tive. For the vast majority of decisions involving the medical treatment of
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children (including forgoing LSMT), pediatric clinicians and parents are in agreement about the desirability of the proposed intervention. Because of the ethical importance of assent, the views of older children should also be given considerable weight. Pediatric ethics committees typically perform at least three differ ent functions: (1) the drafting and review of institutional policy on such issues as DNAR orders and forgoing LSMT, (2) the education of healthcare professionals, patients, and families about ethical issues in healthcare, and (3) case consultation and conflict resolution. Although the process of case consultation may vary, ideally the committee (or consultant) should adopt a collaborative approach that uncovers all the readily available and relevant facts, considers the values of those involved, and balances the relevant interests, while arriving at a recom mendation based on a consistent ethical analysis. One helpful approach involves consideration of the 4 following elements: (1) medical indica tions, (2) patient preferences, (3) quality of life, and (4) contextual fea tures. Another framework based on principles would suggest attention to respect for persons, beneficencenonmaleficence, and justice. Pediatric ethics committees often play a constructive role when parents and medical staff cannot agree on the proper course of action. Over the past several decades, these committees have acquired con siderable influence and are increasingly recognized by state courts as an important aid in decision making. The membership, policies, and procedures of a pediatric ethics committee should conform to accepted professional standards. Downloaded for mohamed ahmed (dr.mms2020gmail.com) at University of Southern California from ClinicalKey.com by Elsevier on April 20, 2024. For personal use only. No other uses without permission. Copyright 2024. Elsevier Inc. All rights reserved. 54 Part I u The Field of Pediatrics NEWBORN SCREENING The Oxford Dictionary of Public Health defines screening as the identification of a previously unrecognized disease or disease precur sor, using procedures or tests that can be conducted rapidly and eco nomically on large numbers of people with the aim of sorting them into those who may have the condition(s) and those who are free from evidence of the condition(s). Several programs, such as new born screening for inborn errors of metabolism (see Chapter 104; e.g., phenylketonuria and hypothyroidism), are rightly counted among the triumphs of contemporary pediatrics. The success of such programs sometimes obscures serious ethical issues that continue to arise in pro posals to screen for other conditions for which the benefits, risks, and costs have not been clearly established. Advances in genetics and tech nology have led to exponential growth in the number of conditions for which screening programs might be considered, with insufficient opportunity to study each proposed testing program (see Chapter 95). The introduction of screening efforts should be done in a carefully con trolled manner that allows for the evaluation of the costs (financial, medi cal, and psychologic) and benefits of screening, including the effectiveness of follow up and treatment protocols. New programs should be considered experimental until the risks and benefits can be carefully evaluated. Screen ing tests that identify
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