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Objective
This study examined whether NSE with internet support (NSEIT) and 4 physiotherapy sessions for 12 weeks were noninferior to the same exercises supervised by a physiotherapist twice a week for 12 weeks (NSE).
PMC10337460
Methods
NDI, pain, chronic WAD grade II, Whiplash Disability, neck-related disability
In this multicenter randomized controlled noninferiority trial with masked assessors, we recruited adults aged 18-63 years with chronic WAD grade II (ie, neck pain and clinical musculoskeletal signs) or III (ie, grade II plus neurological signs). Outcomes were measured at baseline and at 3- and 15-month follow-ups. The primary outcome was change in neck-related disability, measured with the Neck Disability Index (NDI; 0%-100%), with higher percentages indicating greater disability. Secondary outcomes were neck and arm pain intensity (Visual Analog Scale [VAS]), physical function (Whiplash Disability Questionnaire [WDQ] and Patient-Specific Functional Scale [PSFS]), health-related quality of life (EQ-5D-3L and EQ VAS), and self-rated recovery (Global Rating Scale [GRS]). The analyses were conducted on an intention-to-treat basis and with the per-protocol approach as sensitivity analyses.
PMC10337460
Results
NDI
Between April 6, 2017, and September 15, 2020, 140 participants were randomly assigned to the NSEIT group (n=70) or the NSE group (n=70); 63 (90%) and 64 (91%), respectively, were followed up at 3 months, and 56 (80%) and 58 (83%), respectively, at 15 months. NSEIT demonstrated noninferiority to NSE in the primary outcome NDI, as the 1-sided 95% CI of the mean difference in change did not cross the specified noninferiority margin (7 percentage units). There were no significant between-group differences in change in NDI at the 3- or 15-month follow-up, with a mean difference of 1.4 (95% CI –2.5 to 5.3) and 0.9 (95% CI –3.6 to 5.3), respectively. In both groups, the NDI significantly decreased over time (NSEIT: mean change –10.1, 95% CI –13.7 to –6.5, effect size=1.33; NSE: mean change –9.3, 95% CI –12.8 to –5.7, effect size=1.19 at 15 months;
PMC10337460
Conclusions
chronic WAD grades II
NSEIT was noninferior to NSE in chronic WAD and required less physiotherapist time. NSEIT could be used as a treatment for patients with chronic WAD grades II and III.
PMC10337460
Trial Registration
ClinicalTrials.gov NCT03022812; https://clinicaltrials.gov/ct2/show/NCT03022812
PMC10337460
Introduction
whiplash-associated disorders, WADs
VEHICLE ACCIDENT
A whiplash injury is common after a motor vehicle accident, and many individuals experience chronic and disabling whiplash-associated disorders (WADs) [
PMC10337460
Methods
PMC10337460
Design and Setting
This prospective multicenter randomized controlled trial (RCT) compared 2 groups: NSEIT for 12 weeks with 4 visits to the physiotherapist (NSEIT group) versus supervised NSE twice a week for 12 weeks (NSE group).
PMC10337460
Ethics Approval
The study was approved by the regional ethical review board in Linköping, Sweden (2016/135-31) and followed the Declaration of Helsinki. The study protocol has been published elsewhere [
PMC10337460
Participants and Randomization
dizziness, muscle soreness, headache, pain
ADVERSE EVENTS
Study information was provided to potential participants through reports in newspapers and the media, and individuals interested in participating in the study completed a small web-based survey. An apparently eligible participant was contacted for a telephone interview to further verify their medical history and ability to participate in the exercise program. The last step in recruiting participants was a physical examination conducted by a test leader (a physiotherapist) to ensure that the criteria for study participation were met. Informed written consent was obtained from all trial participants, and they filled out a baseline questionnaire. The participants in this noninferiority trial were very similar to the participants in the studies that established efficacy in NSE [A computer-based block randomization list stratified by sex was used for randomization to the 2 groups and allocated by a project team member (GP) not otherwise involved in any of the tests or treatments. After the test leader confirmed eligibility and baseline data were collected, GP sent the participant’s group allocation and contact details in a sealed, opaque envelope to the treating physiotherapist, who called the participant to book an appointment. The treating physiotherapist worked in a health care center near the participant’s home or workplace. This was aimed at facilitating the participant’s opportunity to take part in the study. An envelope was sent to the participants with information on their group allocation and a reminder to contact GP in 2 weeks if the physiotherapist had not called. The test leader was blinded to group allocation at baseline and at the 3- and 15-month follow-ups. The participant was blinded to group allocation when baseline data were collected. At 3 and 15 months, the participants reported adverse events to the test leader (defined as an unforeseen or dangerous reaction to the exercise intervention) or side effects (defined as commonly increased symptoms related to exercises, such as muscle soreness or temporally increased pain, dizziness, or headache for <2 weeks). An independent statistician analyzed the coded data.
PMC10337460
Interventions
Ventral neck muscle endurance, muscle soreness, neurological pain, pain, increase neck pain, disability
Both interventions are described in The NSEIT group had 4 sessions at the physiotherapy clinic. The first session included a clinical examination and an introduction to the first exercises. In the follow-up sessions (weeks 2, 3, and 7), new exercises were introduced, progressed, and followed up to ensure correct performance. Participants had access to the internet-based program on a website. The program included information, photos, and videos of all exercises, with clear stepwise progression and an exercise diary. The NSEs were initially targeted to activate the deep neck muscle layers with an individual progression of endurance exercises within the participant’s symptom tolerance. The participants could contact the physiotherapist by telephone or book an appointment if pain or other symptoms increased during the home exercise period.The NSE group received the same information and exercise program as the NSEIT group, but it was delivered by a physiotherapist. The participants attended 2 sessions a week for 12 weeks at a physiotherapy clinic. In both groups, exercise-related neurological pain was not acceptable and temporarily increased muscle soreness after exercises was only allowed if it did not increase neck pain over time (After the 12 weeks, participants in both groups were encouraged to continue training on their own 2-3 times a week in accordance with the 2017 World Health Organization (WHO) guidelines [Ventral neck muscle endurance is considered important for recovery from neck pain and disability, but relatively small improvements were seen in the previous RCT [
PMC10337460
Outcomes
disability, NDI
The outcome measures were reported using questionnaires on Linköping University’s website, Survey and Reports, at baseline and 3 and 15 months after baseline (ie, 12 months after the intervention ended). Ratings on a VAS and Patient-Specific Functional Scale (PSFS) were collected by the test leader. The participants formulated 3 specific activity goals to improve daily activities at work, during leisure time, and during physical exercise using the PSFS. The goals were specified for time and designed to be achievable during the 3-month rehabilitation program (eg, computer work for 20 minutes, 5 days a week).The null hypothesis was that the clinically important reduction in the NDI in the NSE group would be at least 7 points (percent scale) better than the reduction in the NSEIT group. The noninferiority margin was based on the recommendation for a minimal clinically important change in NDI (7%) [The primary outcome was the NDI, which is considered a reliable and valid measurement of disability due to neck pain [
PMC10337460
Statistical Analysis
SECONDARY
Sample size and power calculations were carried out using PASS (Power Analysis and Sample Size) software (version 13.0.8; NCSS, LLC) based on the primary outcome NDI [The noninferiority tests on primary and secondary outcomes were performed in R (version 3.6.0; R Foundation for Statistical Computing), using the package Demographic characteristics are presented as mean and SD or median and IQR. For binary baseline data, The proportion of responders to treatment was determined in each group, with clinically important improvements in NDI (≥7% reduction) [
PMC10337460
Patients and the Public
RECRUITMENT
Patients were involved in developing the questionnaires. Before recruitment to the study started, the questionnaires were tested by patients to ensure readability and the inclusion of relevant questions. Patient satisfaction with the exercises, information, tests, and their total experience with the interventions were measured post intervention. Qualitative interviews were conducted with a proportion of patients after the study [
PMC10337460
Results
PMC10337460
Within-Group Differences
NDI
Within-group differences and the proportion of responders in self-rated recovery are shown in There were no between-group differences in the proportion of responders to treatment (Proportion of responders to treatment at 3- and 15-month follow-up. Data labels above the bar show the absolute number and the total number of participants (absolute/total) for each measurement. The proportion of responders achieving a clinically important difference in the NDI (≥7%), Visual Analog Scale (≥50% neck pain reduction), and PSFS (≥2 points improvement in PSFS work, leisure time, and physical activity). NDI: Neck Disability Index; NSE: neck-specific exercise at a physiotherapy clinic; NSEIT: neck-specific exercise with internet support; PSFS: Patient Specific Functional Scale.
PMC10337460
Adverse Events
ADVERSE EVENTS, SIDE EFFECTS
No adverse events were reported. Side effects were reported by 31 participants (44%) in the NSEIT group and 39 participants (56%) in the NSE group (
PMC10337460
Discussion
PMC10337460
Principal Findings
decreased disability, disability, chronic WAD, pain
NSEIT was noninferior to NSE, and both groups demonstrated decreased disability and pain, with 47% (23/49)-58% (32/55) of the participants having a sustained clinically important change in disability and a ≥50% reduction in neck pain at the 15-month follow-up. The trial was the first to compare the efficacy of an internet-delivered NSE program including 4 physiotherapy sessions (NSEIT) with that of traditional face-to-face exercise sessions (NSE), showing sustained improved function in chronic WAD of grades II to III in both groups. The NSEIT program responds to the need for increased flexibility and availability for patients with chronic WAD.
PMC10337460
Comparison to Other Studies
chronic WAD grades II, shoulder and lower-limb disorders, pain, neck disability, chronic WAD, neck pain
ADVERSE EVENTS, MUSCULOSKELETAL DISORDERS
The present findings confirm results from other studies showing that an internet-based program may be as good as face-to-face visits in health care [To our knowledge, no studies have investigated if assessment, diagnosis, and the progression of exercises over the internet with or without face-to-face visits can be preferable in chronic WAD grades II and III or in nonspecific neck pain. Four physiotherapy sessions were included in NSEIT during the 12-week intervention. In the first session, the physiotherapist conducted a clinical examination. Based on their examination, they customized an exercise program from a well-defined set of NSEs. The purpose was to justify the exercise program and to help the patient feel safe and motivated to perform the exercises. The other 3 sessions were aimed at answering potential questions regarding the digital information, introducing new exercises, making progress with the existing exercises, or adjusting them to a lower intensity level if needed.To our knowledge, no previous study has investigated exercise interventions or clinical examinations over the internet for individuals with neck pain, but they have been evaluated in other musculoskeletal disorders.Exercise interventions or clinical examinations over the internet have been evaluated for other musculoskeletal disorders. Although patients were satisfied with the assessment and diagnosis of shoulder and lower-limb disorders over the internet [The effects of NSEIT on neck disability, function, and pain were at least as beneficial as NSE immediately post intervention and at 15-month follow-up. No adverse events were assigned to NSEIT, indicating that an internet-delivered exercise program with a few physiotherapy sessions was safe in WAD grades II and III. This noninferiority study confirms and extends knowledge from our previous results [Evidence of optimal treatment for chronic WAD is scarce. Although exercise has the most convincing evidence in regard to neck pain, studies of exercise interventions in chronic WAD have shown disparate results [
PMC10337460
Strengths and Limitations of the Study
WAD
The trial was a multicenter study involving 57 physiotherapists working in primary care clinics in 10 county councils, which enhanced the risk of less control over the delivered interventions. However, the physiotherapists received theoretical and practical training, including written information, and they could contact the project leaders for support when needed. The advantage of the multicenter study is related to the fact that the interventions were delivered by physiotherapists without expert knowledge and skills in WAD and NSE. This may indicate that the results are generalizable and easy to implement in clinical practice. The compliance with exercise was lower in the NSEIT group compared to the NSE group, and further research should establish the individual dosage of exercise and identify individuals in need of a supervised NSE program or other interventions. Further research is also needed to clarify the pathophysiological mechanisms underlying WAD, improve diagnostics, and plan treatment for individuals who do not improve with the NSEs.
PMC10337460
Conclusion and Clinical Implications
whiplash injuries, chronic WAD grades II, pain, chronic pain, disability, whiplash-associated disorder
ADVERSE EVENTS, CHRONIC PAIN
Both the NSEIT and NSE groups demonstrated sustained clinically important changes in disability and pain for approximately 50% of participants. The results showed that NSEIT was not worse than NSE and could be used as a treatment in patients with chronic WAD grades II and III. The results add to previous studies, offering a new way to deliver an NSE program, with important reductions in visits to health care facilities and important symptom reductions for patients with chronic pain and disability after whiplash injuries. No severe adverse events were reported in this study, but participants in both groups experienced mainly temporary (<2 weeks) side effects. The results indicate the importance of knowledge of self-regulating exercises for patients and the importance of physiotherapists having knowledge of how to individualize the progression of exercises. The physiotherapists need to be aware of increased symptoms and slower exercise progression in some individuals with chronic WAD.We would like to thank all participants with whiplash-associated disorder, physiotherapists in primary care, the test leader, and the research staff. The funder had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. The study was founded by Sweden’s Innovation Agency, the Swedish Research Council, the Centre for Clinical Research Sörmland at Uppsala University, the Regional Research Council Mid Sweden, the Medical Research Council of Southeast Sweden, the county council of Östergötland, Sweden, and Linköping University, SwedenConflicts of Interest: None declared.Information about the neck-specific exercise program.The neck-specific exercise program, including exercises to find the deep neck muscles and progression.Per protocol analyses, within-group differences, self-rated recovery, and adverse events.CONSORT-eHEALTH checklist (V 1.6.1).
PMC10337460
Abbreviations
disorderWhiplash Disability
Global Rating ScaleNeck Disability Indexneck-specific exerciseneck-specific exercises with internet supportPatient-Specific Functional Scalerandomized controlled trialVisual Analog Scalewhiplash-associated disorderWhiplash Disability Questionnaire
PMC10337460
Data Availability
The data sets generated during this study are available from the corresponding author on reasonable request.
PMC10337460
Background
diabetes
DIABETES
Two polyclinics in Singapore modified systems and trained health professionals to provide person-centred Care and Support Planning (CSP) for people with diabetes within a clinical trial. We aimed to investigate health professionals’ perspectives on CSP to inform future developments.
PMC10585850
Methods
Qualitative research including 23 semi-structured interviews with 13 health professionals and 3 co-ordinators. Interpretive analysis, including considerations of how different understandings, enactments, experiences and evaluative judgements of CSP clustered across health professionals, and potential causal links between them.
PMC10585850
Results
experiential learning
SAID
Both polyclinic teams introduced CSP and sustained it through COVID-19 disruptions. The first examples health professionals gave of CSP ‘going well’ all involved patients who came prepared, motivated and able to modify behaviours to improve their biomedical markers, but health professionals also said that they only occasionally saw such patients in practice. Health professionals’ accounts of how they conducted CSP conversations varied: some interpretations and reported enactments were less clearly aligned with the developers’ person-centred aspirations than others. Health professionals brought different communication skill repertoires to their encounters and responded variably to challenges to CSP that arose from: the linguistic and educational diversity of patients in this polyclinic context; the cultural shift that CSP involved; workload pressures; organisational factors that limited relational and informational continuity of care; and policies promoting biomedical measures as key indicators of healthcare quality. While all participants saw potential in CSP, they differed in the extent to which they recognised relational and experiential benefits of CSP (beyond biomedical benefits), and their recommendations for continuing its use beyond the clinical trial were contingent on several considerations. Our analysis shows how narrower and broader interpretive emphases and initial skill repertoires can interact with situational challenges and respectively constrain or extend health professionals’ ability to refine their skills with experiential learning, reduce or enhance the potential benefits of CSP, and erode or strengthen motivation to use CSP.
PMC10585850
Conclusion
Health professionals’ interpretations of CSP, along with their communication skills, interact in complex ways with other features of healthcare systems and diverse patient-circumstance scenarios. They warrant careful attention in efforts to implement and evaluate person-centred support for people with long-term conditions.
PMC10585850
Supplementary Information
The online version contains supplementary material available at 10.1186/s12875-023-02168-5.
PMC10585850
Keywords
PMC10585850
Background
diabetes
DISEASE, CHRONIC DISEASES, DIABETES
Over recent decades, significant efforts have been made internationally to ensure that health services (and especially primary care) support the growing numbers of people with chronic diseases to manage these effectively in the context of their daily lives [The concept of person-centredness is variously explained and interpreted but includes notions of health professionals focusing on the person not just the disease, working respectfully The implementation of person-centred support for self-management requires widespread adoption of person-centred values (including by institutional leadership); professional acquisition of relevant skills (including microskills of communication); and development of organisational structures (including information systems) to underpin delivery, including by preparing patients [One of the most established approaches to person-centred support for self-management, especially in the UK, is personalised Care and Support Planning (CSP) [In Singapore, CSP was first introduced for patients being treated for diabetes in a hospital setting in 2017. The endocrinologists involved recognised that the approach could also be appropriate for primary care, including within polyclinics. Polyclinics are multi-professional public sector organisations that (separately from private sector family doctors) provide a broad range of primary healthcare services at subsidised prices for many of the rising numbers of people with diabetes [We report here on a qualitative study of health professionals’ experiences of CSP, conducted to complement both the PACE-D trial and an associated study of patients’ experiences. We aimed to investigate professional perspectives on the introduction of CSP with a view to informing any more widespread adoption of CSP in Singapore. We were particularly aware, from research in UK and Australian settings, that health professionals can vary in their interpretations (including value emphases) and enactments of person-centred support for self-management [
PMC10585850
Methods
This was a qualitative, interpretive study. We conducted individual interviews with health professionals working directly with patients for CSP. For context, we also observed the training session for doctors and nurses involved in PACE-D and team huddles convened to support CSP implementation.
PMC10585850
Individual interviews
VAE, confusion, diabetes
DIABETES
All doctors and nurses who conducted CSP conversations for PACE-D were invited to take part, as were PACE-D coordinators (a new teamlet role introduced to help recruit patients, arrange appointments, and collect data for the trial). Eligible staff were identified and approached by a PACE-D administrator and subsequently a PACE-D coordinator who also helped arrange interviews. Informed consent was documented before interviews commenced.Participants were told that the study aimed to learn from their perspectives, including to identify any concerns or difficulties with CSP, to complement and inform the interpretation of the PACE-D trial data when it became available, and to inform decisions about whether and how CSP would continue beyond the trial. The interviewer (VAE) was introduced to health professionals during their CSP training and first huddles as a non-clinical Professor, new to Singapore, with an interest in person-centred care and self-management support.We planned to conduct two face-to-face interviews with each health professional: one relatively soon after CSP conversations were initiated and a second at least 9 months later once they had more experience with the approach and had seen some patients for follow-up appointments. This reflected recognition that skills can develop with practice and that experience and perspectives can change with time. We were mindful that when interventions such as CSP are introduced, the health professionals who are expected to adopt new practices might benefit from some kind of support as they get used to them, and we thought that conducting two interviews rather than just one, when practices had become more settled, could be useful. In practice, first interviews started later than originally envisaged due to an initial delay in recruiting patients to the study and not all were completed before COVID-19 resulted in access restrictions. Further delays arose when VAE relocated, necessitating a revision to the study protocol and the securing of ethics committee approval to conduct interviews online and from overseas. Some health professionals’ first interviews thus did not take place until at least 12 months after CSP conversations were commenced, and in these circumstances, we judged a second interview unnecessary. To avoid confusion, we refer to the interviews as ‘wave 1’ (conducted relatively soon after CSP was implemented) and ‘wave 2’ (conducted at least 9 months after CSP was implemented). These are indicated as w1 or w2 after quotations. For health professionals who were interviewed twice, the minimum time between first and second interviews was 9 months (average 11 months). We note that the CSP experience levels of health professionals at the time of each wave varied because of a combination of leave and secondment arrangements and, to some extent, preferences for conducting CSP conversations.The interviews were conversational in style, supported by a topic guide that (for doctors and nurses) prompted coverage of: their role in relation to PACE-D, how they had been introduced to CSP and what they had first thought of it; examples of occasions when they thought CSP conversations had gone more and less well; how CSP conversations went compared with previous consultations for diabetes; perceived advantages and disadvantages for patients and for health professionals; any challenges in delivering CSP well; and whether and why they would or would not be inclined to continue with CSP beyond the PACE-D study, or to recommend it to other polyclinics. The topic guide was modified for interviews with PACE-D coordinators and developed over time to reflect questions of interest identified from previous interviews (for example, whether and how CSP works differently for different patient groups). It was annotated for second interviews to pick up points raised previously by each participant, including to check whether and how experiences or views had changed.Interview recordings were a mean of 48 minutes long (range 36 to 74 minutes).Audio-recordings of the interviews were transcribed by medical students on a student work scheme. VAE checked and corrected the transcripts against the audio recordings.
PMC10585850
Observation of training session and huddles
VAE
SAID
By invitation of PACE-D study leads, and with prior agreement from trainers, VAE was introduced to participating health professionals, as noted above, as one of several observers of the local CSP training session for health professionals and of the first lunchtime huddle sessions convened by the trainers to give the health professionals an opportunity to discuss how CSP was going and share concerns or practical tips. Participants were told that the observation could help provide background understanding for the interview study and help inform interpretation of PACE-D trial findings and decisions about the use of CSP beyond the trial. We explained that we were not analysing who said what in the training sessions or huddles, and that no quotations would be used. VAE interacted conversationally with health professionals and trainers during refreshment breaks and was included in lunch arrangements for the huddle. She also participated occasionally, for example, stepping in to make up a pair and play the role of a patient for a role play exercise during the training session, briefly confirming during an early huddle that health professionals in the UK also reported variation in how much preparatory thinking patients did ahead of CSP conversations, and (more significantly) presenting the preliminary analysis from the interview study for discussion at the final huddle observed.A comprehensive set of slides and documents was provided for reference from the training. Note-taking from the huddles was handwritten, not formally structured, and brief. It focused on summarising topics of concern and key features of meetings (e.g. started late because clinics overran; some participants visibly very tired). Huddles were scheduled for an hour, but typically started late. In total VAE attended 7 of 11 huddles and watched recordings of 2 huddles that she could not attend in person. This amounted to approximately 6 hours of active meeting time observed.The observations helped to inform interview questions (for example, prompting inquiry about how CSP conversations were documented in medical records) and provided context to support interpretive analysis of interview data (particularly confirming the nature and strength of concern about logistical challenges, including those associated with long patient queues in clinic).We decided not to observe CSP consultations, both to avoid additional intervention in the context of the PACE-D trial and because the health professionals were already under significant pressure.
PMC10585850
Results
diabetes
DIABETES
We interviewed 11 doctors, 2 nurses and 3 PACE-D coordinators. 7 doctors and 1 nurse were interviewed twice and 2 PACE-D coordinators asked to be interviewed together, so there were 23 interviews in total. 14 interviews (all in the second wave) were conducted online.Our sample includes all but 2 of the health professionals trained to conduct CSP conversations within the PACE-D trial: 2 eligible nurses declined interviews because they conducted very few CSP conversations. 11 participants were from one polyclinic and 5 from the other, reflecting different staffing arrangements.The interviews and huddle observations confirmed reports from PACE-D leaders that both polyclinics managed to establish a CSP system for people with diabetes, and to sustain this through the substantial disruptions of COVID-19 and introduction of a Next Generation Electronic Medical Record system. (At the time of writing CSP has been provided in these polyclinics for over three years – continuing beyond the trial). They also highlighted that the PACE-D coordinators came to play key roles in keeping key CSP processes going (not just supporting research components).We report our findings in three main sections. First, we outline the understandings of CSP evident in doctors’ and nurses’ accounts, including the key contrasts they saw between CSP and their previous ways of working, and the range of benefits they attributed to CSP. Important variations in health professionals’ enactments of CSP are introduced within this section.Second, we consider the challenges to CSP that participants reported as arising from (a) the situated characteristics of local patients and (b) organisational factors and policy pressures. This section also notes variations in health professionals’ interpretations of and enacted responses to these challenges. It indicates how both the external challenges and variations in health professionals’ enactments can impact the achievement and recognition of potential benefits of CSP.Third, we examine health professionals’ overall evaluations of CSP and their inclination to extend its use beyond PACE-D. We show that these evaluations are somewhat contingent on health professionals’ interpretive emphases, experiences of challenges, and awareness of variations in their collective enactments.In the Discussion, we develop our analysis of how variations in health professionals’ interpretive emphases and skill repertoires impact their enactments of CSP, scope to improve these with experience, evaluative judgements of CSP and motivation to continue with the approach.The findings and analysis were endorsed by participants when presented to their team huddle. Health professionals particularly appreciated recognition of the challenges they faced and the recommendations for future organisational support for CSP.
PMC10585850
Understandings and reported enactments of CSP
PMC10585850
When CSP goes well: ‘ideal’ patient behaviours and outcomes
When asked early in their interviews for an example in which CSP went relatively well, participants gave strikingly similar responses. In both waves, all included most of the following elements: a patient comes to their CSP conversation actively ‘prepared’ (having read and reflected on their care planning letter), engages fairly readily in discussion, is willing to act to improve their health, proposes or works with the health professional to set relevant goals and a realistic action plan, leaves the CSP conversation motivated, sticks to their plan and sees (or would see) improvement in targeted biomedical markers at follow-up. A selection of these ‘good example’ accounts is provided in Additional Table In practice, of course, CSP did not always work along these lines. Participants consistently reported that only a minority of patients came to CSP appointments clearly familiar with their test results and able and willing to discuss ideas about their health, let alone set and stick to plans for health-related behaviour change that positively impacted their biomedical markers. Some participants seemed surprised by this and there was some variability in how and to what extent they became reconciled to it.We will return shortly to consider variations in patients’ engagement with CSP. First, though, we continue this section with a description of how health professionals compared CSP with their previous practice. We note both common ground and variation in their understandings and their own contributions to enactments of CSP, as well as in their recognition of its advantages.
PMC10585850
Commonality and variation in professional enactments of CSP conversations
Beyond ideas about how patients would ideally engage with CSP, there was much commonality in health professionals’ descriptions of how they conducted CSP conversations and how these compared with pre-PACE-D ‘usual’ consultations and annual reviews. Consistent features included CSP conversations: being allocated more time; being usefully supported by the visual (graphical) depictions of trends in patients’ biomedical markers that were shared in care planning letters (see There were also, however, significant variations among professional accounts of their understandings and enactments of CSP. Some participants showed and developed a firmer grasp than others of values and communicative practices covered in CSP training, reflecting deeper commitment to the broad purposes and partnership ethos of CSP, following through more consistently on the recognition of patients as persons whose perspectives matter and the idea that the CSP conversation is a meeting between two experts, and describing more nuanced microskills of respectful, empathetic communication and collaboration. Table
PMC10585850
Benefits of CSP beyond improvements in health behaviours and biomedical markers
DISEASE
Between them, participants identified various benefits of CSP independent of (but perhaps intermediate to) changes in patients’ health-related behaviours and improvements in biomedical makers. Benefits identified by at least some health professionals included patients: being better informed; feeling less rushed, more listened to and better respected; sometimes appreciating that “the doctor is caring for them more, caring not for the disease but more emotionally” (HP Seow, w2); and sometimes being encouraged and enabled to feel and take more ownership of their conditions. Some health professionals also reported gaining a better understanding of each patient’s situation and perspective, which could in turn help them: (occasionally) solve previously baffling diagnostic puzzles; avoid unwarranted judgementalism; avoid alienating and demoralising patients; build rapport and trust; tailor suggestions more appropriately to patients and their situations; and “leave the door open” for people to come back for support in the future. Several doctors who stressed the value of these more emotional, relational and perhaps intermediate experiential benefits for patients also commented appreciatively on CSP as a better way of practising, an approach that reflected why they came into medicine, and one that could leave them feeling more satisfied with their encounters with patients and their work more generally (see Table Broader benefits of CSP (beyond improvements to patients’ health-related behaviours and biomedical markers)“I will get to hear more about what really concerns the patients. Yeah. So maybe they feel that now they have more time, or more of an opportunity to voice out their concerns… or they were more likely to talk about it compared to a normal consult where they might feel they were a bit rushed… So I get to understand the patients more.… Spending a few minutes to find out what their preferences are, what their values are, this gives us a better idea of what we’re dealing with and then how to manage these patients subsequently… (HP Ho, w1)I do get a feeling that they feel that if for once they have been given the opportunity to talk more to the doctor, and let the doctor know about their side of the story, how they feel about things, they will get more satisfaction from that. Yeah. And the doctor is listening [laughs]. I think from the patient's point of view, they always like it when the doctor is listening [laughs].” (HP Ho, w1)Patients have time and opportunity to voice concerns.Health professionals can better hear and understand.Patients may be more satisfied.Patients can talk about what matters to them.Patients may appreciate being listened to.Health professionals can avoid demoralising patients.Health professionals can investigate rather than dismiss sources of upset.Health professionals can listen to and learn from patients.Health professionals can show empathy and develop rapport with patients.Health professionals can enjoy work more; this way of working can benefit professional wellbeing.Variations in health professionals’ comments about these broader benefits of CSP seem to reflect variations in both their views of the purposes of CSP and their conduct of CSP conversations. It seems plausible at least that the broader benefits will be more readily realised and recognised when health professionals are more strongly committed, and have a deeper understanding of what it takes, to work in respectful partnerships, relate to patients as experts in their own lives, and take seriously patients’ own priorities for their health and wellbeing. The broader benefits will also carry more evaluative weight if these commitments are considered morally significant. We take the commitments to be consistent with the person-centred ambitions of CSP.We will return to “
PMC10585850
Variations in patients’ ability and willingness to engage
diabetes
DIABETES
Participants reported that many patients did not open or read, let alone reflect and write in care planning letters before their appointments. In the early stages of PACE-D they estimated that up to 30% of patients did not read the letter at all. They reported that this improved after it was agreed that PACE-D coordinators would check and provide more active assistance when patients came into the clinic (see below) and as patients became more familiar with the process.Health professionals further experienced many patients as reticent or lacking confidence to engage in conversation about their diabetes in the context of their life. They mostly explained this with reference to some combination of language diversity, education and culture, although some somewhat judgementally also suggested a lack of interest on patients’ part, and some more sympathetically recognised that a long social history of medical practice Care planning letters were issued in whichever of three languages (English, Chinese or Malay) a patient preferred. However, many older adults in Singapore received little education and literacy rates among people over 55 are relatively low [All participants were used to conducting consultations in at least two languages, but several explained that language skills that sufficed for ‘usual’ consultations were not necessarily up to the more nuanced demands of open, broad-ranging and potentially emotional CSP conversations. Patients, too, might have limited ability and confidence to express complex thoughts and feelings in the language of the conversation, and the limitations of interpreters could be particularly problematic for CSP consultations.Several participants commented that aspects of Singaporean or more broadly Asian cultures meant many people were not used to being asked for their opinion, particularly in healthcare contexts where (to a greater extent than in the UK or more broadly Western cultures within which CSP originated) doctors are deferred to as authority figures and families and family hierarchies are influential in healthcare decision-making. The CSP approach represented a big cultural-behavioural shift within polyclinic service provision. People with diabetes who had attended clinics for many years were likely to be strongly habituated to ‘usual’ consultation practices in which they were assessed quickly and sent away with medication and instructions. While all participants showed some awareness of the diversity of patients’ educational and cultural backgrounds and socioeconomic circumstances, some reflected these less clearly and sensitively than others in their accounts of CSP conversations. Not all recognised that patients might need substantial encouragement and experience of a few rounds of CSP to adapt to the expectation that they engage as ‘equal’ partners with the health professional in conversation. Not all seemed particularly able or willing to cede their biomedical priorities and authority to facilitate such partnerships.The reticence and perhaps limited ability of many patients to engage in CSP recurred in participants’ accounts as a challenge that would tend to limit achievement of the approach’s theoretical promise, particularly in relation to biomedical health outcomes. Some participants quite quickly got “stuck” when patients volunteered little in the way of ideas and opinions (this was perhaps more likely if the health professionals were encouraging a focus on biomedical test results). These health professionals described often ending up with a CSP conversation that was more like a “usual consult”. Those who were also less inclined to recognise other potential benefits considered patients who were less able or willing to engage “less suitable” for CSP. Other health professionals, in contrast, were apparently more determined to hear and work with patients’ perspectives and persisted as constructively as they could with whatever little they could elicit from patients’ initial responses, expressing hope that patients would become more confident and open with more experience of the CSP approach. A few described developing and refining their questioning over time to help patients reflect on and express what was important to them.
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Organisational arrangements and policy priorities shaping delivery of CSP
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CSP training, professional huddles and PACE-D coordinator support
Health professionals spoke positively about the CSP training they received and the promise of the approach that it conveyed. Some described starting to use some of the ideas and techniques they learned immediately – before patients had been recruited for PACE-D. There were, however, some challenges associated with the training and support provided for health professionals which we note here.For some participants, a time lag between the training and their first formal CSPs with patients meant they perhaps forgot some ideas and techniques and lacked confidence before they started in earnest. Several participants also reported “getting rusty” during periods of leave or secondment and having to rack their brains to remember what CSP entailed when they returned to the teamlet.Some health professionals commented in interviews that the scenarios used in training were simpler than those encountered in the clinic where patients did not all follow an ideal kind of script. During the final huddle at which these findings were shared, members of the training team shared a reflection that perhaps they had painted too rosy a picture and so set up too high expectations during the first CSP training session.The huddles, intended as supportive sharing and learning opportunities, were scheduled for lunchtimes, with food provided. Health professionals typically arrived late as morning clinic sessions ran over time, and they were often visibly tired. In the first huddles, a few practical challenges and questions were raised and addressed, including how to encourage patients to engage with their results information ahead of the consultation (which led to an arrangement that PACE-D coordinators could print a copy of the letter when patients checked in for their appointment and support them to review test results and think about questions or goals before seeing the doctor or nurse). In later huddles, partly in response to insights emerging from this study, CSP trainers shared short videos and presentations encouraging reflection on empathy and goal setting (including attention to goals beyond the biomedical) and examples of completed goal and action plan pages.
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Appointment scheduling and clinic session pressures
diabetes
MINOR, DIABETES
Both polyclinics scheduled all CSP conversations for two specific weekdays, but routine consultations, including walk-in appointments, were also allocated to these clinic sessions. Some participants found the intermittency of CSP conversations within clinic sessions challenging because they needed to keep switching gears for the change from “usual” consultations.The workload pressure generated by long patient queues was a strong theme in all interviews. In principle, more time was allocated for CSP conversations (fewer appointments were allocated to clinic sessions with CSPs). In practice, however, participants were often uncomfortably aware that their teamlet partner would be struggling with a long patient queue while they took 20-30 minutes for a CSP conversation – and they would also return to face the queue. All participants admitted at least minor shortfalls from what they understood to be good enactments of a CSP conversation when feeling this pressure. This was well summed up by HP Boon’s reflection that “We may short-change our CSP patients to a certain extent” (w1), but the shortfalls apparently varied in the extent to which they undermined the values and ethos of CSP. When keeping an eye on the patient queue resulted in sometimes rushing a bit, being less fully empathetic, or not working through the steps of goal setting and action planning with patients with well-controlled diabetes and no significant concerns, the shortfalls were arguably less significant than more routinely “cutting short” what patients were saying and “reverting back” to usual consults along the lines of telling patients what to do and being summarily dismissive of those not ready to act on their diabetes as health professionals would prefer.
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Teamlet working and record systems: challenges to continuity
Patients’ CSP conversation appointments were to a teamlet clinic session, not to a health professional. Teamlets were notionally staffed by two doctors and a nurse, but various leave and secondment arrangements (especially through COVID-19 disruptions) meant multiple health professionals rotated through the teamlets providing CSP. PACE-D leaders had trained sufficient health professionals in CSP to cover staff movements, but staffing changes limited continuity of professional-patient pairings before and after CSP conversations.Some health professionals thought the lack of relational continuity could contribute to patients’ reluctance to “open up” in consultations. It could also limit scope to build the kind of rapport that some participants considered necessary to enable them to challenge patients in ways consistent with the empathetic and collaborative ethos of CSP.Challenges to continuity were exacerbated by limitations of the medical record-keeping system (including after the introduction of the new system). Although the records of patients enrolled in PACE-D were flagged, some participants found it hard to identify which of a patient’s previous appointments had been for a CSP conversation, so struggled to find notes about important information patients might have shared and goals and action plans agreed. Several participants admitted that appointments after the CSP conversation were not always recognised as follow-ups. This could limit continuity of approach as well as continuity of information: a few participants expressed concern that an ethos of empathic engagement with patients’ perspectives was not always sustained as not all colleagues were inclined to extend their use of open questions, affirmation and reflection to consultations other than CSP conversations.In addition to potentially diminishing patients’ experiences and the effectiveness of CSP, limited relational and informational continuity also obscured health professionals’ view of how patients progressed, potentially depriving them of positive motivational reinforcement when their efforts with CSP were bearing fruit.
PMC10585850
A systemic focus on biomedical markers and diabetes
diabetic, diabetes
DIABETES
Although CSP training emphasised working with patients as persons and stressed the value of health professionals attending to patients’ concerns and priorities relating to their diabetes and broader wellbeing, participants were aware that the primary outcome of the PACE-D trial was HbA1c, and that their teamlet and polyclinic performance was judged on HbA1c and other biomedical markers, with implications for salary bonuses. Some participants also recognised that several features of the care planning letter (which they often referred to as the “results letter”) tended to encourage patients to concentrate on biomedical markers.Health professionals managed these potentially competing demands with different emphases. This had implications for their view of what was important for them to hear in CSP conversations as well as their assessment of what was agreed with patients and of subsequent outcomes.Health professionals who conveyed a narrower view of the purpose of CSP worried that inviting patients to talk about their concerns could expose them to a long list of issues to be addressed, many of which would be irrelevant to the patient’s diabetes or were not things health professionals could help with. These health professionals sometimes acknowledged that it could be useful to find out about a person’s daily routine and key concerns to be able to tailor their professional advice about diet and exercise (to help ensure action plans to achieve biomedical goals were feasible), but their reasoning about this was somewhat narrowly instrumental.In contrast, health professionals who put more emphasis on the idea that the CSP conversation should focus on the person and what mattered to them seemed also to value learning more about patients’ lives and perspectives. They appreciated getting to know people better and being able to empathise and allow a patient to feel “more human” in the conversation. Some reported a range of benefits of this broader understanding contingent on the situation. We noted above that some participants had developed strategies to “fish out” a sense of patients’ priorities even from those who seemed less able or willing to respond to unfamiliar requests to communicate their goals. A few of those with broader views of the purpose of CSP had explicitly formulated questions to encourage patients to think broadly about what mattered in their lives.Another key point of variation was whether and to what extent health professionals saw a need for a clear action or action plan to conclude a CSP conversation – particularly to know or have evidence that they had done something to address poor diabetic control. Some participants seemed determined to have a professional or biomedical last word if a person appeared disinclined to do anything for themselves to improve on poor diabetes control, reverting to “usual” consultation practice with an emphasis on their own perspective and reiteration of their advice that the patient really should be taking action. For others, in contrast, CSP training had taught them or supported a previous view that it was not necessarily a professional failure to do nothing, or not emphasise a point that a patient already knew; in some circumstances the kinds of outcomes identified in Table
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Health professionals’ evaluations of CSP
We have seen that health professionals varied in terms of how they interpreted and enacted CSP, including in response to the challenges posed in the polyclinic context. In this section, we examine their broader evaluative judgements.When asked for their overall evaluations of CSP and thoughts about whether CSP should be extended beyond the PACE-D study or to other polyclinics, health professionals were generally cautious in their responses, expressing uncertainty and giving qualified “it depends” type responses. There were various reasons for this, not least that they all awaited the results of the PACE-D trial for evidence of any population-level effect of CSP on HbA1c. As noted, participants only saw clear improvements in biomedical markers in a minority of patients, and limited continuity of care obscured their view of how things went for many of the patients with whom they had CSP conversations. Their interpretation of the lack of evident quick biomedical wins varied, and although they often recognised some other benefits of CSP relative to “usual” consultations, they attached different, sometimes uncertain, levels of significance to these.No participants expressed any concerns about patients being worse off for being offered CSP (except when considering what would happen if they persistently harangued reluctant patients for ideas and goals – which none of them reported doing). A few, like HP Wu, expressly noted that “there’s never been a case where it is worse than the normal consult” (w2).For some health professionals, however, the benefits of CSP, whether narrowly or more broadly construed, came at the price of significant professional effort. It could be difficult to learn and remember how to conduct CSP conversations, some struggled to switch between CSP conversations and usual consultations, and the pressure of the patient queue added stress to a longer CSP conversation. Some health professionals became rather demoralised when they did not see many patients come as “prepared” for as hoped for CSP, when they kept getting “stuck” when patients’ engagement was limited, and when fewer patients than they had anticipated showed clear behavioural or health status improvement at follow-up.Significant administrative and PACE-D coordinator resources were invested in producing and sharing care planning letters with patients and supporting CSP processes. CSP conversations also had opportunity costs in terms of the professional consultation time available for other patients. Resource considerations featured in several “I’m a fan of CSP, but” and “it depends” evaluative statements.In addition to the proportionality of benefit and effort or cost, overall evaluations of CSP also depended on what health professionals used as their reference comparator. When compared with rare but striking best examples of patient behaviour change and biomedical improvement, health professionals’ more routine experiences with CSP could seem unsuccessful, especially if success was measured over a short time horizon from one CSP conversation. When compared with usual consults, however, they could seem significantly better – especially when richer enactments and a broader set of potential benefits were considered and a longer timeframe was allowed for the realisation of potential health benefit.Opinions about whether CSP should be extended beyond the PACE-D trial could also depend significantly on which patient groups were considered (or proposed to be included in the future), and how situational challenges and variations in professional practice would be addressed. Some health professionals advocated offering CSP to a more limited group of patients, and perhaps concentrating its delivery among a smaller group of health professionals.
PMC10585850
Discussion
The health professionals who participated in the PACE-D trial have contributed to the implementation of CSP in a busy public sector primary care environment, and they sustained it through COVID-19. This is a significant achievement, especially given the documented pressures of working in Singapore’s polyclinics [The experiences and insights that these health professionals shared allow us to extend theoretical understanding of the significance of health professionals’ interpretive emphases of CSP and the complex interactions of these with external contextual challenges. Our analysis of this, which we report below after a brief discussion of the strengths and limitations of our study methods, is particularly relevant for the development and evaluation of future efforts to introduce CSP and other forms of person-centred support for people with long-term conditions, especially in contexts where prevailing healthcare and broader social cultures include a strong deference on (bio)medical authority. Along with the more evident scope identified in the
PMC10585850
Strengths and limitations of methods
In the context of the PACE-D trial, we observed CSP training, interviewed all doctors and nurses who conducted more than a handful of CSPs (half of them twice) and observed a series of professional huddles. We generated a rich dataset that supported detailed examination of both commonality and variation in health professionals’ interpretations, enactments, experiences and evaluations of CSP, and enabled us to consider how these developed (or not) over time as familiarity with the intervention grew. What we heard from the health professionals involved in CSP conversations was consistent with what we learned from PACE-D coordinators and resonated for the CSP trainers (who also led the huddles). Our findings and key analytic points were endorsed by participants when we presented them at a PACE-D huddle.Important limitations were that we did not observe clinical enactments of CSP and did not attempt to link our interviews with health professionals to interviews with patients. Because the interviews were conducted in the context of the ongoing PACE-D trial, experiences of trial participation inevitably overlay participants’ experiences of CSP in clinical practice. This might have increased some participants’ emphasis on biomedical markers and experiences of tension between biomedical and patient priorities. It does not, we believe, undermine the robustness of our analysis and recommendations.
PMC10585850
Contribution to theoretical understanding
diabetes
DISEASE, DIABETES
As briefly noted in Our study supports and enables us to extend this previous work with more attention to temporal and teamworking considerations and the operation of interpretive emphases within complex and value-laden systems of healthcare provision. We develop here an analysis of how the interpretive emphases, value commitments and skill repertoires that health professionals bring to CSP interact with practical-situational challenges external to the health professionals involved. We also outline the implications not only for how health professionals conduct CSP conversations and follow-up consultations, but also for their scope to develop their skills with practice, for their experiences of CSP and motivation to use it over time, for the overall impact of CSP, and for health professionals’ evaluations of the approach.Table Interpretations and skill repertoires that impact enactments and evaluations of CSPImprove health and broader wellbeing, working with person’s own perspective on these.(This can include, but is not limited to, biomedical markers and risk factors).CSP allows space for and perhaps gives a formal structure to approaches to working with patients that were already of interest or being tried.OrCSP involves a significant change in approach involving a shift in values towards more sharing and a greater appreciation of working with what matters to the patient.‘Ideal’ account of CSPOrThe most positive examples of substantial improvements in patients’ biomedical markers following CSP.We take the ‘less conducive’ side first. Health professionals who view improvements in the biomedical markers of diabetes as the ultimate purpose of CSP, and who expect CSP as an intervention to deliver those improvements as a result of patients conforming to expectations that they will actively prepare for and engage in consultations and make and follow through on plans to improve their health, will have relatively little scope to see their efforts with CSP as successful when CSP ‘works’ like this for only a minority of patients. If they further (perhaps relatedly) think that CSP will only benefit patients who come to a CSP conversation already motivated to act to improve their diabetes, health professionals can quickly become pessimistic about its prospects when relatively few people arrive having written in their care planning letter or otherwise willing, ready and able to contribute ideas about what they can do. The value of CSP for people whose diabetes is currently well controlled may also seem questionable.If health professionals also consider what is unique or importantly different about CSP primarily in terms of process steps, they are less able to reason confidently about when it is appropriate to ‘skip’ certain steps – for example if goal setting and action planning is not a top priority given a patient’s current circumstances and concerns (a tick box process orthodoxy can work against the flexible responsiveness that CSP requires).If health professionals think the main reason for listening to patients is to identify scope to tailor their advice and better persuade patients to change their behaviour to improve their diabetes, then other things that patients tell them, including about other conditions, financial worries or other social concerns, can seem irrelevant to their conversations. If health professionals feel obliged to address these concerns once raised, however, more open questioning risks adding to their workload or sense of failure. The investment of professional time and energy may not seem worthwhile, especially in busy clinics and amidst concerns about the opportunity costs of the approach.If health professionals have little prior interest or learning to support their attention to patients’ psychosocial issues, they can get “stuck” quite quickly when patients are not very forthcoming in conversation. If they lack the foundation to develop their communication skills and approaches beyond those covered in the CSP training session, this can contribute to a downward spiral of professional enthusiasm and more negative evaluations of CSP.In contrast, on the ‘more conducive’ side, health professionals have much more scope to see success if they have a broader and more flexible view of the purpose of CSP, including the idea that the focus of the CSP conversation and any resulting actions should be set or strongly influenced by the patient and what is important to them. Even if a particular CSP conversation cannot be considered an unequivocal success, a broad view of purpose and valuing of the emotional, relational and perhaps intermediate experiential gains from CSP can help health professionals to accept (rather than view as a failure) when CSPs result in little immediate action or evident progress on a professionally concerning health issue. If the patient’s concerns and considered priorities had been heard, the patient was aware of any serious professional concerns, and the door had been left open for further discussion in the future, agreeing to keep important issues in view might perhaps be as far as they fruitfully could go in that consultation.If health professionals have more realistic expectations about the time frame over which any general, population-level health benefits of CSP are likely to emerge and if they recognise that these depend on multiple other influences beyond the CSP conversation (including follow-up consultations as well as patients’ circumstances and behaviours, and the not entirely linear causal connections between behaviours and health indicators) they are also less likely to be disappointed about what CSP achieves.The scope to see some success even when patients do not engage with CSP as fully as hoped or do not achieve as much health improvement as the ‘best’ examples is more likely to keep health professionals enthusiastic and motivated to continue with the approach. A sense of potential to learn and improve on enactments of CSP can also help in that regard. In our study, health professionals who expressed strong interests in the psychosocial aspects of primary care or in “people more than disease”, and those with more advanced communication skills and familiarity with reflexive, practice-based learning were also more inclined and confident to develop and refine their enactments of CSP, for example by trying out different questioning strategies. A combination of a broad sense of purpose, commitment to be flexibly and respectfully responsive to patients, and good initial skill repertoire facilitated positive development of practice over time.Our study demonstrates the complex interactions between health professionals’ interpretive emphases, value commitments and skill levels and the various challenges associated with diverse patient situations and organisational systems. It identifies potential for negative feedback loops to develop from narrow interpretations of purpose and limited initial skill sets, and for positive feedback loops to develop from broader interpretations of purpose, a stronger initial skill repertoire, and confidence and support for reflective learning and skill development.In healthcare contexts in which there is limited relational continuity in care, significant variability between the various health professionals involved in a team providing CSP will reduce the chance of any one patient from benefitting richly from a CSP conversation and from effective follow through from that conversation. Limited relational and informational continuity also reduce the scope for health professionals to see benefit from their efforts with CSP and make it less likely that patients become more familiar and comfortable with CSP approach over time. Divergence from key CSP principles is thus likely to be particularly detrimental to the overall success of the approach in such circumstances.
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Conclusions
CSP has been implemented and sustained in two busy polyclinics in Singapore. Health professionals’ accounts have illuminated some important challenges and variability of enactments and experiences of CSP. They supported an analysis that highlights the practical significance of health professionals’ interpretations of the purpose of CSP and their valuation of relational, emotional and other perhaps intermediate experiential outcomes as well as the more typically considered behavioural and biomedical outcomes. Health professionals’ interpretations of CSP, along with their communication skill repertoires and support for reflective experiential learning, interact in complex ways with other features of healthcare systems and diverse patient-circumstance scenarios. They warrant careful attention in efforts to implement and evaluate person-centred support for people with long-term conditions.
PMC10585850
Acknowledgements
RECRUITMENT
We are extremely grateful to the health professionals who took part in interviews for this study and allowed observation of their team huddles. We also thank LIM Mui Eng and ANG Shu Lin for supporting the recruitment of health professionals and arrangement of interviews, Monica ASHWINI for arranging transcription and discussion of patients’ experiences of PACE-D, Matthavi SENGUTTUVAN for contributions to early analytic discussions, Marlie FERENCZI and LOY En Yun for support with grant administration, data sharing agreements and helpful suggestions, and the Year of Care Partnerships team, especially Lindsay OLIVER and Nick LEWIS-BARNED for training health professionals and trainers in Singapore and for ongoing advice and support, including helpful comments on a draft of this manuscript.
PMC10585850
Authors’ contributions
V.A.E., T.W.Y., E.S.T., V.L. and W.H.T. conceived the study in discussions. V.A.E. conducted the interviews, observed and made field notes from the huddles, led the data analysis and drafted the manuscript. T.W.Y. and V.L. led the professional huddles and provided additional reflections on these. SM contributed to data analysis and a significant restructuring of the first draft of the manuscript. All authors contributed to discussion of the findings, gave critical comment on manuscript drafts, and read and approved the final manuscript.
PMC10585850
Funding
VAE
CHRONIC DISEASE
The PACE-D programme is funded by Singapore’s Ministry of Health. This study was funded by the Centre for Chronic Disease Prevention and Management of the National University Health System, Singapore. SM was supported by a Wellcome Trust Institutional Strategic Support Fund flexible returners award (University of Aberdeen, RG13795-18). VAE’s contribution was also supported by a Wellcome Trust Collaborative Award: This research was funded in whole, or in part, by the Wellcome Trust [209811/Z/17/Z]. For the purpose of open access, the author has applied a CC BY public copyright licence to any Author Accepted Manuscript version arising from this submission.
PMC10585850
Availability of data and materials
The datasets generated and analysed during the current study are not publicly available due to the agreement made with participants to protect individual professional privacy. They may be available from the corresponding author on reasonable request subject to approval from the Yong Loo Lin School of Medicine, National University of Singapore.
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Declarations
PMC10585850
Ethics approval and consent to participate
Approval for this study was granted by National Healthcare Group Domain Specific Review Board (NHG DSRB Ref 2018/01288) and all methods were performed as stipulated in accordance with the guidelines and regulations. Written informed consent was obtained from all participants prior to the interviews. All study procedures were conducted in accordance with relevant ethical guidelines and regulations.
PMC10585850
Consent for publication
Not applicable.
PMC10585850
Competing interests
The authors declare no competing interests.
PMC10585850
References
PMC10585850
Abstract
A full list of MRC Unit The Gambia StrepA Study Group members is in the Notes. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.
PMC10547459
Background
Immunity to
PMC10547459
Methods
A post hoc analysis was performed in 320 children randomized to receive LAIV at baseline (LAIV group) or not (control).
PMC10547459
Results
The point prevalence of
PMC10547459
Conclusions
Asymptomatic Understanding natural immunity to Epidemiological observations have demonstrated association between invasive
PMC10547459
METHODS
PMC10547459
Study Population and Design
VIRAL SHEDDING
We conducted a post hoc observational study nested within a randomized controlled trial of LAIV, studying immunogenicity, viral shedding and microbiome interactions in children aged 24–59 months in Sukauta, an urban region of The Gambia. The study (NCT02972957) was conducted over 2 years between February to April 2017, and January to March 2018 [
PMC10547459
Determination of
Participants had a nasopharyngeal swab taken at day 0 (immediately prior to LAIV receipt), days 7 and 21, using flocked swabs (FLOQSwabs) stored in RNAprotect (Qiagen). Samples were processed within 4 hours of collection and stored at −70°C until further processing. DNA was extracted from 200 μL of RNAprotect using the AGOWA Mag Mini DNA extraction kit (LGC Genomics) in combination with phenol-bead beating as previously described [Study profile: 320 participants were randomized 2:1 to the LAIV (day 0 vaccine) or control (day 21 vaccine) group. All participants (colonization study group) had
PMC10547459
Antibody Measurement
BLOOD, SEPARATION, INFLUENZA
Blood was collected in serum separation tubes from participants in the LAIV group, for study end points on influenza vaccine immunogenicity [Enzyme-linked immunosorbent assay (ELISA) optimization was performed to determine optimal To measure antibody titers to the additional vaccine antigens group A carbohydrate (GAC) and streptolysin O (SLO), an optimized 4-plex (GAC, SLO, SpyCEP, SpyAD) serology assay using the Luminex platform was performed on all available sera using a described protocol [
PMC10547459
Statistical Analysis
REGRESSION
All statistical analysis was performed in R (version 4.0.1). Comparison of Samples where optical density measured by ELISA fell below the detection limit of the standard curve, were allocated a random value between zero and the limit of detection. Antibody titers in Luminex data were interpolated using xPonent 4.2 software (Luminex Corporation) using 5-parameter logistic regression. For the 4-plex Luminex assay, where both limit of accurate quantification and detection were characterized, results falling below respective limits were randomly assigned a value between zero and the lowest value of each limit [
PMC10547459
RESULTS
PMC10547459
infected skin sores
REGRESSION
A total of 320 participants were included in this study, of which 212 received LAIV ( Data are No. (%).Pearson χTo explore changes in colonization status within an individual over time in all children (n = 320), a generalized logistic mixed effects regression model was used to explore the odds of Factors Associated With Abbreviations: CI, confidence interval; OR, odds ratio.Only 17 of 71 (23.9%) participants with We compared symptom data during the study period for all 294 children in the acquisition study group. Ten children had infected skin sores during the 21-day follow-up, 9 in the LAIV group and 1 in the control group (5% vs 1%,
PMC10547459
Serological Responses to
ELISA-quantified serum antibody titers at day 21 in 40/48 colonized participants were compared with those in 61 randomly selected noncolonized participants (all from the LAIV group due to sera availability). Missing serum was due to insufficient remaining material from the parent study. The age was not significantly different between participants included in serological study who were colonized compared to noncolonized controls (median age in months 36 vs 32, Serological responses to Serological responses to
PMC10547459
DISCUSSION
autoimmunity
AUTOIMMUNITY
In this post hoc study of a randomized controlled trial in The Gambia, we analyzed the impact of LAIV on We also demonstrate that asymptomatic The definition of true Protection following asymptomatic colonization and Our study has several key limitations. Firstly, it was a post hoc analysis of a study that was not designed or powered to assess the impact of LAIV on Nonetheless, our study provides several important findings. Understanding both naturally occurring protective immunity and pathological autoimmunity to
PMC10547459
Supplementary Data
PMC10547459
Supplementary Material
Click here for additional data file.
PMC10547459
Notes
Lancefield
INFECTIOUS DISEASES, DISEASES
Presented in part: Lancefield Symposium for Streptococcal and Streptococcal Diseases, Stockholm, 7–10 June 2022 and European Congress of Clinical Microbiology and Infectious Diseases, 9–12 July 2021, Online.For the purpose of open access, the author has applied a CC BY public copyright licence to any Author Accepted Manuscript version arising from this submission.
PMC10547459
References
PMC10547459
Abstract
Present affiliation: Departamento de Medicina, Dermatología y Toxicología, Unidad de Enfermedades Infecciosas, Hospital Clínico, Universitario de Valladolid, Valladolid, Spain.Members are listed in the Acknowledgements section.
PMC10775153
Background
bacteraemic urinary tract infections
Fosfomycin is a potentially attractive option as step-down therapy for bacteraemic urinary tract infections (BUTI), but available data are scarce. Our objective was to compare the effectiveness and safety of fosfomycin trometamol and other oral drugs as step-down therapy in patients with BUTI due to MDR
PMC10775153
Methods
REGRESSION
Participants in the FOREST trial (comparing IV fosfomycin with ceftriaxone or meropenem for BUTI caused by MDR-Ec in 22 Spanish hospitals from June 2014 to December 2018) who were stepped-down to oral fosfomycin (3 g q48h) or other drugs were included. The primary endpoint was clinical and microbiological cure (CMC) 5–7 days after finalization of treatment. A multivariate analysis was performed using logistic regression to estimate the association of oral step-down with fosfomycin with CMC adjusted for confounders.
PMC10775153
Results
Overall, 61 patients switched to oral fosfomycin trometamol and 47 to other drugs (cefuroxime axetil, 28; amoxicillin/clavulanic acid and trimethoprim/sulfamethoxazole, 7 each; ciprofloxacin, 5) were included. CMC was reached by 48/61 patients (78.7%) treated with fosfomycin trometamol and 38/47 (80.9%) with other drugs (difference, −2.2; 95% CI: −17.5 to 13.1;
PMC10775153
Conclusions
Fosfomycin trometamol might be a reasonable option as step-down therapy in patients with BUTI due to MDR-Ec but the higher rate of relapses would need further assessment.
PMC10775153
Introduction
Bacteraemic
URINARY TRACT INFECTIONS
Bacteraemic urinary tract infections (BUTI) are frequent, with estimated age-adjusted incidence rates of 20–50 episodes per 100 000 person-years.Fosfomycin remains active against a high proportion of MDR In the FOREST trial, IV fosfomycin was compared with ceftriaxone or meropenem as initial targeted therapy for BUTI due to MDR
PMC10775153
Patients and methods
PMC10775153
Study design and participants
This is a post hoc analysis of the FOREST trial (clinicaltrials.gov identifier: NCT02142751), of which main results were previously published.The study protocol allowed switching to oral therapy according to the treating physician criteria, after a minimum of 4 days of IV treatment if the following conditions were fulfilled: clinical improvement, haemodynamic stability, tolerance to oral intake, and isolate susceptible to one of the permitted oral drugs. The permitted drugs were fosfomycin trometamol (3 g q48h) for patients assigned to IV fosfomycin, and cefuroxime axetil (250 mg q12h), ciprofloxacin (500 mg q12h), amoxicillin/clavulanate (500–125 mg q8h), or trimethoprim/sulfamethoxazole (160–800 mg q12h) for patients assigned to IV ceftriaxone or meropenem. In addition, switch to parenteral ertapenem was allowed for patients with ceftriaxone-resistant isolates assigned to meropenem if no oral drugs were available. For this analysis, only patients in whom step-down to an oral drug was performed were included.The study was approved by the Andalusian Ethics Committee (registry: CCEIBA 0039/14); written informed consent was obtained from all participants. This report followed the STROBE recommendations (Table
PMC10775153
Study variables
bloodstream infection, Sepsis, prostate, pain, dysuria, infection
INFECTION, BLOODSTREAM INFECTION, SEPSIS, PROSTATE
The primary endpoint was clinical and microbiological cure (CMC) at the test of cure (TOC; 5–7 days after finalization of treatment). Clinical cure was defined as resolution of all new signs and symptoms of infection, and microbiological cure (or eradication) as no isolation of the causative Baseline characteristics of patients with bloodstream infection due to MDR Data are number of patients (percentage) except where specified. eGFR, estimated glomerular filtration rate.Chi-squared test unless otherwise indicated.Mann–Whitney Fisher test.Included open surgery of the urinary tract, nephrostomy, double-J stent catheter placement, cystoscopy, transurethral resection, transrectal prostate biopsy.According to Friedman’s criteria.Included dysuria, urinary frequency or urgency, and suprapubic pain.Defined according to 2001 SCCM/ESICM/ACCP/ATS/SIS International Sepsis Definitions Conference.According to referenceImprovement in all new signs and symptoms of infection.
PMC10775153
Microbiological studies
Bacteria identification and susceptibility testing was performed at local microbiology laboratories using standard techniques. The blood isolates were sent to Hospital Universitario Virgen Macarena, where identification and antimicrobial susceptibility were confirmed using MALDI-TOF and microdilution, respectively, according to EUCAST recommendations
PMC10775153
Statistical analysis
tenderness, lumbar pain
REGRESSION, SECONDARY
The primary analysis was the difference risk calculated as the absolute difference with two-sided 95% CI in the proportion of patients reaching the primary and secondary endpoints in patients switched to oral therapy with fosfomycin trometamol and to other drugs. Subgroup analyses (according to sex, age groups, fosfomycin MIC, urinary catheter, and presence of lumbar pain or tenderness) were performed for the primary endpoint. In addition, because patients were not randomized for being stepped-down to oral therapy, a multivariate analysis was performed using logistic regression to estimate the association of oral step-down with fosfomycin with the primary endpoint controlling for exposure variables with a bivariate
PMC10775153
Results
REGRESSION, EVENTS, SECONDARY
Among the 143 patients included in the modified intention-to-treat population of the FOREST trial, 108 (75.5%) were switched to oral drugs and 35 were not (Figure In order to provide information about the generalizabilty of the results, we compared the 108 patients who were switched to oral drugs with the 35 who were not; the data are shown in Table For the comparison of oral drugs, we included 61 patients switched to oral fosfomycin trometamol (the 60 randomized to IV fosfomycin plus 1 patient randomized to meropenem who was switched to oral fosfomycin by mistake) and 47 switched to other drugs (28 to cefuroxime axetil, 7 to amoxicillin/clavulanic acid, 7 to trimethoprim/sulfamethoxazole, and 5 to ciprofloxacin).The features of patients stepped-down to oral drugs are shown in Table The outcomes are shown in Table Analysis of the primary endpoint (clinical and microbiological cure) and secondary endpointsAll endpoints were evaluated using ITT criteria (i.e. lack of assessment was considered as not reaching clinical cure or microbiological eradication), except for relapses and reinfections, for which only detected events were considered. Data are number of patients with the endpoint/total treated (percentage). TOC, test of cure.Reasons for not reaching clinical and microbiological cure: lack of urine sample for microbiological assessment, 2; clinical assessment at TOC missing, 2; microbiological failure, 9; clinical failure, 3 (these 3 also had a microbiological failure).Reasons for not reaching clinical and microbiological cure: clinical assessment at TOC missing, 1; microbiological failure, 5; clinical failure, 3.The estimation of the association of fosfomycin trometamol with clinical and microbiological cure was adjusted for age, gender, Charlson index, invasive procedure of the urinary tract and ceftriaxone susceptibility of the isolate in a regression model; the adjusted ORs for CMC, clinical cure and microbiological cure were 1.11 (95% CI: 0.42–3.29, Subgroup analyses for clinical and microbiological cure using ITT criteriaData are number of patients with the endpoint/total treated (percentage). Among patients treated with fosfomycin trometamol, we explored whether exposure to some key variables was associated with a different risk of CMC. Regarding sex, CMC with fosfomycin was 77.4% (24/31) in men and 80.0% (24/30) in women [relative risk (RR), 0.96; 95% CI: 0.74–1.25; Outcomes of patients treated with fosfomycin trometamol as step-down according to the MIC of the Isolates unavailable for susceptibility testing at central laboratory.AEs were reported for 17 patients receiving oral fosfomycin and nine other oral drugs (27.8% versus 19.1%,
PMC10775153
Discussion
fever, cUTI, infection, bacteraemia, pyelonephritis, febrile UTI
COMPLICATED URINARY TRACT INFECTION, PYELONEPHRITIS, INFECTION, UTI, URINARY TRACT INFECTION
In the FOREST trial, step-down to any oral therapy was used more frequently in patients assigned to IV fosfomycin than in those assigned to IV ceftriaxone or meropenem, which could be explained by differences in reaching the criteria for oral step-down (as seen by differences in reaching early clinical response) and because susceptibility to other oral drugs was less frequent in the latter (particularly for ceftriaxone-resistant isolates), confirming that fosfomycin trometamol is a potential alternative for oral step-down drug in patients with MDR Fosfomycin trometamol has been traditionally used for uncomplicated cystitisRegarding clinical studies, we found only two studies comparing fosfomycin trometamol with other oral drugs as step-down regimens in patients with cUTI and fever, pyelonephritis and/or bacteraemia; their data in comparison with this study are shown in Table Features of studies comparing fosfomycin trometamol as oral step-down with other drugs in patients with complicated urinary tract infections including fever, pyelonephritis and/or bacteraemiaAMC, amoxicillin/clavulanic acid; CIP, ciprofloxacin; COMP, comparators; cUTI, complicated urinary tract infection; CXM, cefuroxime axetil; ETP, ertapenem; FOF, fosfomycin trometamol; SXT, trimethoprim/sulfamethoxazole; UTI, urinary tract infection.Clinical cure defined as resolution of signs and symptoms of infection without relapse at Day 30.Clinical cure defined as being alive with reduction of all initial local and systemic febrile UTI-related symptoms, without the requirement of additional antibiotic therapy for UTI, at Days 6–10 post-end of treatment.Clinical cure defined as resolution of all new signs and symptoms of infection, 5–7 days after end of treatment.The second study was a double-blind randomized trial in women with febrile UTI due to Overall, comparison of our results with these studies is complex because of the differences in inclusion criteria, features of patients and microorganisms (Table Some recent studies have shown that uncomplicated bacteraemia due to Enterobacterales may be treated for only 7 days, mostly with β-lactams or fluoroquinolones.Limitations of this study include lack of randomization for oral step-down; therefore, we used multivariate analysis to adjust for confounders. Also, the sample size was limited. The comparators included different drugs, although all had been shown to be similarly effective as step-down options.In conclusion, fosfomycin trometamol might be useful as step-down therapy in patients with BUTI due to susceptible
PMC10775153
Supplementary Material
Click here for additional data file.
PMC10775153
Acknowledgements
Canarias
DEL
The Data Safety Monitoring Board of FOREST were formed by Benito Almirante, Mario Fernández and Jose R. Paño-Pardo.Other members of the REIPI-GEIRAS-FOREST group are: Marina De Cueto, Zaira Palacios-Baena, Isabel Morales, Luis Eduardo López-Cortés, Belén Gutiérrez-Gutiérrez, Manuel Camean, Vicente Merino (Hospital Universitario Virgen Macarena, Seville); Encarnación Moral-Escudero, Ana Pareja-Rodríguez De Vera, María del Carmen Mártinez-Toldos, Genoveva Yagüe-Guirao (Hospital Clínico Universitario Virgen de la Arrixaca, Murcia); Ana Blázquez-Abellán (Hospital General Universitario Santa Lucía, Cartagena, Murcia); Alba Belles-Belles, María Fernanda Ramírez-Hidalgo (Hospital Universitari Arnau de Vilanova, Lleida); Beatriz Mirelis (Hospital de la Santa Creu i Sant Pau, Barcelona); Esther Calbo (Hospital Universitari Mútua Terrassa, Terrassa, Barcelona), Mariona Xercavins (CatLab, Viladecavalls, Barcelona); Irene Gracia-Ahufinger, Angela M. Cano-Yuste (Hospital Universitario Reina Sofía, Córdoba); Laura Guío, Jose Luis Hernández (Hospital Universitario de Cruces, Instituto de Investigación Biocruces, Baracaldo, Vizcaya); Carlos Pigrau-Serralach, Belen Viñado-Pérez, Mireia Puig-Asensio (Hospital Universitario Vall d’ Hebron, Barcelona); Carmen Ardanuy, Miquel Pujol (Hospital Universitario de Bellvitge, Barcelona); Dácil García-Rosado (Hospital Universitario de Canarias, La Laguna); Concepción Gil-Anguita (Hospital Marina Baixa, Villajoyosa, Alicante); Ana Siverio (Laboratori de Referéncia a Catalunya, Barcelona); Adelina Gimeno-Gascón, Vicente Boix-Martínez, Sergio Reus-Bañuls, Iván Agea-Durán, Livia Giner-Oncina (Hospital General Universitario de Alicante, Alicante); Carmen Fariñás (Hospital Universitario Marqués de Valdecilla, Santander); Lucía Valiente De Santis, Begoña Palop (Hospital Regional Universitario de Málaga, Málaga); Helem Vilchez (Hospital Son Espases, Palma de Mallorca); José Antonio Lepe, María Victoria Gil-Navarro, Clara Rosso, María Ángeles Lobo-Acosta (Hospital Universitario Virgen del Rocío, Sevilla); Jose T. Silva, Rafael San Juan, Fernando Chaves (Hospital Universitario Doce de Octubre, Madrid); Rosa Escudero, Francesca Gioia, Ana María Sánchez-Díaz (Hospital Universitario Ramón y Cajal, Madrid); Miguel A. Cárdenes, Ana Cañas-Pedrosa, Nayra Sangil-Monroy (Hospital Universitario de Gran Canarias Dr Negrín, Las Palmas de Gran Canaria); Carla Toyas Miazza (Hospital Royo Villanova, Zaragoza).
PMC10775153
Funding
This work was supported by Plan Nacional de I + D + i 2013–2016, Instituto de Salud Carlos III, Ministerio de Ciencia, Innovación y Universidades, co-funded by European Development Regional Fund ‘A way to achieve Europe’, Operative Program Intelligence Growth 2014–2020, via the following grants: PI 13/01282; CIBERINFEC (CB21/13/00002; 00006; 00009; 00012; 00049; 00054; 00068; 00084; 00099); and Spanish Clinical Research and Clinical Trials Platform (SCReN, PT17/0017/0012). The funders had no influence in the design, analysis, reporting or decision to publish.
PMC10775153
Transparency declarations
EVENTS
P.R.-G. reports receiving honoraria as speaker in lectures from Angelini, Menarini and Shionogi. C.A.-P. reports personal fees from Janssen and Gilead outside the submitted work; J.C.-M. reports personal fees from Astra-Zeneca, non-financial support from Angelini, Pfizer and Gilead, outside the submitted work. V.P. has participated in accredited educational activities sponsored by MSD, Pfizer and Shionogi and has been a consultant for Pfizer, Shionogi and Correvio. C.J.D. received support from Gilead, Janssen Cilag and Pfizer for attending meetings, and was a member of advisory boards for Janssen Cilag and Gilead. M.L. received honoraria for educational events organized by bioMérieux, and support for attending meetings from Wefen, bioMérieux and Pfizer. R.M.M.-A. reports honoraria as speaker and support for attending meetings from Janssen, Gilead, Pfizer and MSD. All other authors report no conflicts.
PMC10775153
Author contributions
RECRUITMENT
J.S.-D.: patients’ recruitment, data collection, analysis, manuscript drafting. I.L.-H.: microbiological studies, analysis, critical review of manuscript. A.H.-T.: patients’ recruitment, data collection, critical review of manuscript. P.R.-G.: patients’ recruitment, data collection, critical review of manuscript. E.M.d.L.: patients’ recruitment, data collection, critical review of manuscript. L.E.-V.: patients’ recruitment, data collection, critical review of manuscript. E.B.: patients’ recruitment, data collection, critical review of manuscript. E.G.-V.: patients’ recruitment, data collection, critical review of manuscript. V.P.: patients’ recruitment, data collection, critical review of manuscript. L.B.-P.: patients’ recruitment, data collection, critical review of manuscript. C.N.-K.: patients’ recruitment, data collection, critical review of manuscript. L.S.: patients’ recruitment, data collection, critical review of manuscript. N.B.: patients’ recruitment, data collection, critical review of manuscript. C.A.-P.: patients’ recruitment, data collection, critical review of manuscript. E.S.: patients’ recruitment, data collection, critical review of manuscript. A.J.-S.: patients’ recruitment, data collection, critical review of manuscript. J.M.: patients’ recruitment, data collection, critical review of manuscript. R.M.M.-A.: patients’ recruitment, data collection, critical review of manuscript. C.J.D.: patients’ recruitment, data collection, critical review of manuscript. J.C.-M.: patients’ recruitment, data collection, critical review of manuscript. M.L.: patients’ recruitment, data collection, critical review of manuscript. V.P.: patients’ recruitment, data collection, critical review of manuscript. I.B.: data monitoring supervision, data monitoring, critical review of manuscript. V.P.-J.: data collection, sites coordination, critical review of manuscript. F.D.-P.: microbiological studies, analyses, critical review of manuscript. Á.P.: microbiological studies, microbiological supervision, study design, critical review of manuscript. J.R.-B.: study design, study supervision, obtained funding, drafting and final version of manuscript.
PMC10775153
Supplementary data
Tables
PMC10775153
References
PMC10775153
Abstract
PMC10075285
Background
cancer, death, Cancer
CANCER, CANCER
Cancer is a leading cause of death among people 15–24 years of age. Increasing numbers of cancer patients survive. Extensive cancer therapy may cause wide‐ranging somatic and psychosocial challenges in the lives of the survivors.Research indicates adolescent and young adult cancer (AYA) survivors need to be seen as a distinctive group of survivors having unique health care needs. The existing literature suggests the need for specific follow‐up care programs addressing the challenges of AYAs and providing them access to specialized after care, as well as a need to explore AYA cancer survivors' own illness experiences.
PMC10075285
Aims
cancer
CANCER, LENS
Through the theoretical lens of narrative medicine and care ethics, our purpose was to investigate the particular challenges encountered by the AYA cancer survivors, and how they view themselves in light of their illness experiences. We ask how AYA cancer survivors are met and understood by their medical professionals?
PMC10075285