The relative importance of information items and preferred mode of delivery when disseminating results from trials to participants: A mixed‐methods study

BackgroundParticipants want to receive the results of trials that they have participated in. Dissemination practices are disparate, and there is limited guidance available on what information to provide to participants and how to deliver it.ObjectivesThis study aimed to establish what trial participants believe should be included in a results summary and how this information should be delivered.MethodsA mixed‐methods design was used with focus groups and interviews involving women convenience‐sampled from two host randomized‐controlled trials. Participants ranked information items in order of their importance for inclusion in a trial results summary and potential modes of delivery by preference. All participants provided written informed consent.ResultsSixteen women (mean age [SD] = 71.6 [9.7] years) participated. Participants ranked ‘individual results from the study’ and ‘summary of overall trial results’ as most important. Themes such as reassurance and setting results in context were identified as contributing to participants'' decisions around ranking. ‘A thank you for your contribution to the study’ was ranked the least important. Delivery by post was the preferred mode of receiving results, with receiving a hard copy of results cited as helpful to refer back to.ConclusionOur findings provide insight into what information trial participants deem as important when receiving trial results and how they would like results delivered. Involving patients during development of trial results to be communicated to participants could help to ensure that the right information is delivered in the right way.Patient or Public ContributionPublic partners were involved in focussed aspects of study conduct.     

Why don't patients seek help for chronic post‐surgical pain after knee replacement? A qualitative investigation

BackgroundAlthough many people are satisfied with their outcome after total knee replacement surgery for osteoarthritis, around 20% report chronic post‐surgical pain. People are often disappointed and unsure about whether their pain is normal and what can be done about it. Given the high prevalence of long‐term post‐operative pain after knee replacement, there is potentially a large hidden population with an unaddressed need for care.ObjectiveIn this study, we focus on understanding why some people choose not to consult health care for chronic post‐surgical pain after knee replacement.MethodsSemi‐structured interviews were conducted with people who had received total knee replacement, at either of two National Health Service hospitals in the United Kingdom, and who had chronic post‐surgical pain (n = 34, age 55‐93 years). Data were audio‐recorded, transcribed and analysed thematically.ResultsWe found an overall sense of futility amongst participants who believed that nothing further could be done for their on‐going pain. People''s perception of their pain was often discordant with that of surgeons and physicians. Other factors that contributed to decisions not to seek help included low expectations about effectiveness and the risks involved in further treatment, treatment burden, participants'' prioritization of other health conditions and views about candidacy. Many accepted their on‐going pain.ConclusionOur study indicates why some people with chronic pain after knee replacement do not seek further health care. Understanding patients'' beliefs and expectations about chronic post‐surgical pain can inform approaches that might enable people to seek help in the future.     

Insights into how Malaysian adults with limited health literacy self‐manage and live with asthma: A Photovoice qualitative study

BackgroundAdjusting to life with a chronic condition is challenging, especially for people with limited health literacy, which is associated with low compliance with self‐management activities and poor clinical outcomes.ObjectiveWe explored how people with limited health literacy understand asthma and undertake self‐management practices.DesignWe adapted the arts‐based qualitative methodology Photovoice.Setting and ParticipantsWe sampled ethnically diverse adults with asthma and limited health literacy from four primary healthcare clinics in Malaysia. After a semistructured in‐depth interview, a subset of participants took part in the Photovoice component in which participants undertook a 2‐week photo‐taking activity and subsequent photo‐interview. Interviews, conducted in participants'' preferred language, were audio‐recorded, transcribed verbatim, translated and analysed thematically. We used the Sorensen''s framework (Domains: access, understand, appraise, apply) to describe participants'' experience of living with asthma, what they understood about asthma and how they decided on self‐management practices.ResultsTwenty‐six participants provided interviews; eight completed the Photovoice activities. Participants with limited health literacy used various sources to access information about asthma and self‐management. Doctor–patient communication had a pivotal role in helping patients understand asthma. The lack of appraisal skills was significant and experiential knowledge influenced how they applied information. Self‐management decisions were influenced by sociocultural norms/practices, stigmatizing experiences, and available social support.ConclusionLocally tailored multilevel interventions (interpersonal, health system, community and policy) will be needed to support people with limited health literacy to live optimally with their asthma in an ethnically diverse population.Patient/Public ContributionPatients were involved in the study design, recruitment, analysis and dissemination.     

Developing lay summaries and thank you notes in paediatric pragmatic clinical trials

IntroductionBetter transparency of research results and participant engagement may help address poor participant accrual in paediatric clinical research. We conducted formative research to assess the acceptability of lay summaries and thank you notes, as well as to refine and expand guidance on participant and family engagement in Pediatric Trials Network''s (PTN) pragmatic paediatric clinical research.MethodsInformed by draft PTN guidance, we conducted in‐depth qualitative interviews with adolescent clinical trial participants and caregivers of paediatric participants in four trials conducted by PTN across eight sites. Participants were shown multiple versions of mock lay summaries and thank you notes and asked questions on their preferences for content and layout, and on trial communications. We used applied thematic analysis to analyse the data.ResultsWe interviewed 27 individuals engaged in PTN research: 24 caregivers and 3 adolescents. During a trial, participants want regular updates on study progress, reminders of the study purpose and reassurances of data confidentiality. After the trial, participants want to learn the aggregated results, particularly medication effectiveness. Participants reported that lay summaries should include a review of the study''s purpose, methods and length, and that they expect to learn individual‐level results. Participants stated that thank you notes must be of sufficient length to be meaningful.ConclusionsThis is the first study to describe stakeholder preferences for thank you note content and layout. Using these findings, we finalized PTN''s trial communication guidance for use in future PTN trials. Research is needed to determine the effect of lay summaries and thank you notes on improving public transparency regarding clinical trials and paediatric trial recruitment and completion.Patient or Public ContributionBy design, stakeholders (adolescent trial participants and caregivers of pediatric trial participants) contributed to PTN''s guidance on the content and layout of lay summaries and thank you notes through their participation in the in‐depth interviews.     

Compliant citizens,defiant rebels or neither? Exploring change and complexity in COVID‐19 vaccine attitudes and decisions in Bradford, UK: Findings from a follow‐up qualitative study

BackgroundCOVID‐19 vaccines have been the central pillar of the public health response to the pandemic, intended to enable us to ‘live with Covid’. It is important to understand change and complexity of COVID‐19 vaccines attitudes and decisions to maximize uptake through an empathetic lens.ObjectiveTo explore the factors that influenced people''s COVID‐19 vaccines decisions and how their complex attitudes towards the vaccines had changed in an eventful year.Design and ParticipantsThis is a follow‐up study that took place in Bradford, UK between October 2021 and January 2022, 1 year after the original study. In‐depth phone interviews were conducted with 12 (of the 20 originally interviewed) people from different ethnic groups and areas of Bradford. Reflexive thematic analysis was conducted.ResultsEleven of the 12 participants interviewed had received both doses of the COVID‐19 vaccine and most intended to have a booster dose. Participants described a variety of reasons why they had decided to have the vaccines, including the following: feeling at increased risk at work; protecting family and others in their communities; unrestricted travel and being influenced by the vaccine decisions of family, friends and colleagues. All participants discussed ongoing interaction with COVID‐19 misinformation and for some, this meant they were uneasy about their decision to have the vaccine. They described feeling overloaded by and disengaged from COVID‐19 information, which they often found contradictory and some felt mistrustful of the UK Government''s motives and decisions during the pandemic.ConclusionsThe majority of participants had managed to navigate an overwhelming amount of circulating COVID‐19 misinformation and chosen to have two or more COVID‐19 vaccines, even if they had been previously said they were unsure. However, these decisions were complicated, demonstrating the continuum of vaccine hesitancy and acceptance. This follow‐up study underlines that vaccine attitudes are changeable and contextual.Patient or Public ContributionThe original study was developed through a rapid community and stakeholder engagement process in 2020. Discussion with the Bradford Council Public Health team and the public through the Bradford COVID‐19 Community Insights Group was undertaken in 2021 to identify important priorities for this follow‐up study.     

Co‐creation of information materials within the assent process: From theory to practice

IntroductionThe informed consent process is key to safeguarding the autonomy of the participant in medical research. For this process to be valid, the information presented to the potential participant should meet their needs and be understood by them. The i‐CONSENT project has developed ‘Guidelines for adapting the informed consent process in clinical trials’ which aim to improve informed consent so that they are easier to understand and better adapted to the needs and preferences of the target population. The best way to tailor information to the characteristics and preferences of the target population is to involve the community itself.MethodsFollowing guidelines developed by i‐CONSENT, assent materials were co‐created for a mock clinical trial of the human papillomavirus vaccine in adolescents. During the process, two design thinking sessions were conducted involving a total of 10 children and 5 parents. The objectives of the sessions were to find out the children''s opinion of the informed consent (assent in their case) process in clinical trials, identify the parts that were most difficult to understand and alternatives for their presentation and wording, identify the preferred formats for receiving the information and the main characteristics of these formats, design a video explaining the clinical trial and evaluate a tool for assessing comprehension.ResultsAssent materials were co‐created in three formats: a web‐based material following a layered approach; a video in story format; a pdf document with an innovative way of presenting information compared to traditional assent documents. In addition, the Comprehension of Assent Questionnaire was co‐designed, based on the Quality of Informed Consent questionnaire.ConclusionThe design thinking methodology has proven to be an easy and useful tool for involving children in designing information tailored to their needs and preferences.Patient or Public ContributionA sample of the target population participated in the design and piloting of the materials created using design thinking methodology. In addition, patient representatives participated in the design and evaluation of the guidelines developed by the i‐CONSENT project that were followed for the development of the materials in this study.     

Medical mistrust and patient satisfaction with mammography: the mediating effects of perceived self‐efficacy among navigated African American women

BackgroundMedical mistrust is salient among African American women, given historic and contemporary racism within medical settings. Mistrust may influence satisfaction among navigated women by affecting women''s perceptions of their health‐care self‐efficacy and their providers'' roles in follow‐up of abnormal test results.ObjectivesTo (i) examine whether general medical mistrust and health‐care self‐efficacy predict satisfaction with mammography services and (ii) test the mediating effects of health‐related self‐efficacy.DesignThe current study is a part of a randomized controlled patient navigation trial for medically underserved women who had received a physician referral to obtain a mammogram in three community hospitals in Chicago, IL. After consent, 671 African American women with no history of cancer completed questionnaires concerning medical mistrust and received navigation services. After their mammography appointment, women completed health‐care self‐efficacy and patient satisfaction questionnaires.ResultsWomen with lower medical mistrust and greater perceived self‐efficacy reported greater satisfaction with care. Medical mistrust was directly and indirectly related to patient satisfaction through self‐efficacy.ConclusionsPreliminary findings suggest future programmes designed to increase health‐care self‐efficacy may improve patient satisfaction among African American women with high levels of medical mistrust. Our findings add to a growing body of literature indicating the importance of self‐efficacy and active participation in health care, especially among the underserved.     

Service‐user experiences of an integrated psychological intervention for depression or anxiety and tobacco smoking in improving access to psychological therapies services: A qualitative investigation into mechanisms of change in quitting smoking

IntroductionHigh smoking prevalence leads to increased morbidity and mortality in individuals with depression/anxiety. Integrated interventions targeting both smoking and mood have been found to be more effective than those targeting smoking alone, but the mechanisms of change of these interventions have not been investigated. This qualitative study aimed to understand participants'' experiences of the mechanisms underlying change in smoking behaviour following an integrated cognitive behavioural technique‐based intervention for smoking cessation and depression/anxiety.MethodsThis study was embedded within an ongoing randomized‐controlled acceptability and feasibility trial (http://www.isrctn.com/ISRCTN99531779). Semistructured interviews were conducted with 15 IAPT service users. Data were analysed using thematic analysis. During the interviews, participants were asked open‐ended questions about their quitting experience and perception of how the intervention aided their behaviour change.ResultsFive themes were identified. Acquiring an increased awareness of smoking patterns: participants described an increased understanding of how smoking was contributing towards their mental health difficulty. Developing individualized strategies: participants described acquiring ‘a couple of tricks up your sleeve’ that were helpful in making smoking cessation feel more ‘manageable’. Practitioner style as ‘supportive but not lecture‐y’: participants expressed how important the therapeutic alliance was in helping change their smoking behaviour. Importance of regular sessions: participants expressed the importance of ‘having someone that''s checking in on you’. Having the opportunity to access the intervention at ‘the right time’: participants described the intervention as the ‘push’ that they ‘needed’.ConclusionsParticipants identified key factors towards smoking behaviour change. Perceived increased awareness of how smoking negatively impacted participants'' mental health, and the opportunity to be offered smoking cessation treatment in a ‘non‐judgemental’, ‘supportive’ environment, with regular sessions and individualized strategies contributed to successful smoking cessation outcomes. If similar results are found in more diverse samples, these aspects should be embedded within integrated interventions for smoking cessation and depression/anxiety.Patient or Public ContributionPersons with lived experience of depression, anxiety and tobacco addiction contributed towards the design of the interview schedule, participant information sheets and the debriefing process. This was to ensure that interview questions were relevant, nonjudgemental and acceptable for those who did not manage to quit smoking.     

Delivering the unexpected—Information needs for PSA screening from Men's perspective: A qualitative study

BackgroundMaking decisions about PSA screening tests is challenging, as it requires both knowledge of the possible benefits and harms of screening and an individual assessment of the patient''s values. Our research explores how much and what information men perceive to be necessary with regard to screening for prostate cancer.ObjectiveTo explore men''s information and associated needs for decision making in PSA testing.DesignQualitative interview study.Setting and participantsWe interviewed 32 men (aged 55‐69) about their decision making on PSA screening following counselling with a Decision Aid at their GP’s or urologist''s practice in Germany.Main Outcome MeasuresMen''s expressed needs for decision making in PSA testing.MethodsAll interviews were transcribed verbatim and analysed by framework analysis.ResultsComprehensive pre‐screening counselling is needed. For the men in our study, information about test (in)accuracy, the benefit‐harm balance and consequences of the test were relevant and surprising. Additional needs were for interpretation support, a take‐home summary and time for deliberation. For several men, their physician''s attitude was of interest. After being well‐informed, most men felt empowered to make a preference‐based decision on their own.DiscussionMen were surprised by what they learned, especially regarding the accuracy and possible harms of screening. There is large variation in the breadth and depth of information needed, and some controversy regarding the consequences of testing.Conclusion and patient contributionA core set of information should be offered before men make their first PSA screening decision. Information about biopsy and associated side‐effects could follow in a short form, with details only on request. Knowledge about a high rate of false‐positive test results beforehand might help men handle a suspicious test result.     

‘I Don't Like Uncertainty,I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication

BackgroundTechnological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication. Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision‐making from conceptualizations of a ‘well‐considered’ decision.MethodsUM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of ‘well‐considered’ decision‐making, where ‘well‐considered’ decisions involve consideration of all likely outcomes.ResultsParticipants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty.ConclusionsWhile respecting decisions as valid expressions of participants'' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their decisions as ‘well‐considered’. We propose that nondirective preference exploration techniques could help people to consider the possibility of a poor outcome.Patient or Public ContributionThis paper is a direct response to a patient‐identified and defined problem that arose in therapeutic and conversational discourse. The research was informed by the responses of patient participants, as we used the material from interviews to dynamically shape the interview guide. Thus, participants'' ideas drove the analysis and shaped the interviews to come.     

Opt‐in or opt‐out health‐care communication? A cross‐sectional study

BackgroundPatients need medication and medical condition‐related information to better self‐manage their health. Health‐care professionals (HCPs) should be able to actively provide information outside of one‐on‐one consultations; however, patient consent may be required.ObjectiveTo investigate the Australian public''s preferences, and factors that may influence their preferences, towards an opt‐in versus an opt‐out approach to health communication.DesignA cross‐sectional study using a structured questionnaire administered via Computer‐Assisted Telephone Interviewing.Setting and participantsParticipants across Australia who were adults, English‐speaking and had a long‐term medical condition.Main outcome measuresPreferences for opt‐in vs opt‐out approach to receiving follow‐up tailored information.ResultsA total of 8683 calls were made to achieve the required sample size of 589 completed surveys. Many (346/589; 58.7%) indicated that they were interested in receiving tailored, ongoing follow‐up information from their HCP. Nearly half (n = 281; 47.7%) preferred an opt‐in service and 293/589 (49.7%) an opt‐out service for receiving follow‐up information. Reasons for preferring an opt‐in service were being in control of the information received (n = 254); able to make a decision that is best for them (n = 245); opt‐in service would save time for HCPs (n = 217); they may not want or need the information (n = 240). Many (n = 255) felt that an opt‐out service should be part of the normal duty of care of their HCP and believed (n = 267) that this approach would ensure that everyone has access to information.ConclusionsRespondents were interested in receiving tailored information outside of consultation times. However, preferences for an opt‐in or opt‐out approach were divided.     

‘We have goals but [it is difficult]’. Barriers to antiretroviral therapy adherence among women using alcohol and other drugs living with HIV in South Africa

BackgroundWomen living with HIV who misuse alcohol and live in economically disadvantaged settings in South Africa experience a multitude of contextual barriers as they navigate the HIV care continuum. The Women''s Health CoOp (WHC), a brief, woman‐focused, behavioural, evidence‐based intervention, has been shown to be effective in reducing heavy drinking and improving HIV‐related outcomes among this key population. However, these women face other broader socioecological barriers to antiretroviral therapy (ART) adherence.MethodsThe WHC was implemented in a modified, stepped‐wedge implementation science trial in public health clinics and substance use treatment programmes in Cape Town, South Africa. A qualitative substudy was conducted to explore barriers to HIV treatment adherence among women enrolled in this trial. Eight focus group discussions were conducted with 69 participants 6 months after completion of the WHC workshops. Focus groups were audio‐recorded (with consent), transcribed verbatim and analysed using a thematic approach.ResultsThe mean age of the participants was 33 years and the mean self‐reported number of drinks per day was 13. The main contextual factors influencing participants’ ART adherence were intrapersonal‐level factors (substance use, financial constraints, food insecurity; community‐level factors (anticipated and enacted stigma, community violence) and institutional‐level factors (patient–provider relationships, health facility barriers, environmental stigma).ConclusionComprehensive interventions addressing the contextual barriers and unique challenges faced by women who misuse alcohol in low‐resource settings that intersect with HIV treatment nonadherence should be implemented in tandem with successful biobehavioural HIV interventions for long‐term effectiveness and sustainability.Patient or Public ContributionOur South African community collaborative board has been involved throughout this study; participants and clinic staff voices have been essential in our interpretation of these findings.     

The impact of Patient and Public Involvement in the SlowMo study: Reflections on peer innovation

BackgroundThe SlowMo study demonstrated the effects of SlowMo, an eight‐session digitally supported reasoning intervention, on paranoia in a large‐scale randomized‐controlled trial with 362 participants with schizophrenia‐spectrum psychosis.AimThe current evaluation aimed to investigate the impact of Patient and Public Involvement (PPI) in the SlowMo study.MethodPPI members were six women and three men from Sussex, Oxford and London with experience of using mental health services for psychosis. They received training and met at least 3‐monthly throughout the project. The impact of PPI was captured quantitatively and qualitatively through (i) a PPI log of recommendations and implementation; (ii) written subjective experiences of PPI members; (iii) meeting minutes; and (iv) outputs produced.ResultsThe PPI log revealed 107 recommendations arising from PPI meetings, of which 87 (81%) were implemented. Implementation was greater for recruitment‐, data collection‐ and organization‐related actions than for dissemination and emergent innovations. Qualitative feedback revealed impacts on study recruitment, data collection, PPI participants'' confidence, knowledge, career aspirations and society more widely. Outputs produced included a film about psychosis that aired on BBC primetime television, novel webpages and journal articles. Barriers to PPI impact included geography, travel, funding, co‐ordination and well‐being.DiscussionA future challenge for PPI impact will be the extent to which peer innovation (innovative PPI‐led ideas) can be supported within research study delivery.Patient and Public ContributionPlanned Patient and Public Contribution in SlowMo comprised consultation and collaboration in (i) design, (ii) recruitment, (iii) qualitative interviews and analysis of service users'' experiences of SlowMo therapy and (iv) dissemination.     

Decision making on antenatal screening results: A comparative Q‐method study of women from two Chinese cities

BackgroundAlthough an integral part of ethical and quality health care, little is known about the informed decision making of Chinese women with different socioeconomic backgrounds within the context of antenatal testing.MethodsTo explore women''s viewpoints on informed decision making regarding antenatal screening, a Q‐methodology study that combines both quantitative factor analysis and interviews was conducted between June 2016 and February 2017 in Shanghai and Duyun. A total of 169 women (84 Shanghai and 85 Duyun) participated in the study of 41 ranked statements along a Q‐sorting grid.ResultsUsing by‐person factor analysis, five distinct viewpoints are identified: (a) choice is shared with the partner/husband, but the mother has the right to make the final decision; (b) having antenatal tests is not about choice but about a mother''s responsibility; (c) choice is a shared decision led primarily by the partner/husband and secondarily by the doctors; (d) choice should be made using the advice of doctors, but the decision should be made with the partner/husband; and (e) choice is a responsibility shared with the partner, family and doctors.ConclusionsThe study reveals that women with better education and higher incomes demonstrate more autonomy than those with less education. The nuclear family clearly emerges as the main decision makers in health‐care services in China.Patient and Public ContributionThe 169 participants shared their views and stories for at least an hour. They were debriefed after the interviews and contributed their thoughts on our study design and interpretation of the data.     

‘It gives you the skills of how you can cope’: Exploring the self‐reported experience of patients receiving in‐centre haemodialysis on participating in chosen art activities

BackgroundIncreasing numbers of patients are receiving dialysis, particularly in high‐income countries. Patients receiving haemodialysis often experience fatigue, anxiety, depression and boredom. It is suggested that arts activities could have a therapeutic effect.ObjectiveThis study aimed to explore patients'' perspectives of participating while on dialysis in chosen arts and creative living activities provided by tutors at the bedside.DesignQualitative semi‐structured interviews in the interpretive tradition were conducted, with thematic analysis.Setting and ParticipantsFifteen patients of different ages, genders and ethnicities who participated in an arts activity while receiving haemodialysis in an inner‐city dialysis unit in England were included in this study.ResultsParticipants reported positive experiences of engaging in art activities. Their views on the value of the activities were grouped into five themes: diversion from receiving haemodialysis, a sense of achievement, contribution to a more positive self‐identity, increased confidence and motivation and a therapeutic talking relationship. Participants suggested that patient peer promotion of the activities could increase uptake, with patient choice of activity seen as important.ConclusionsParticipation in a chosen arts activity while receiving haemodialysis was perceived by patients to have positive psychosocial effects. We theorize three potential explanatory mechanisms for these effects: That the experience of participating in the activities engendered positive psychological states of ‘being in the flow’; enhanced self‐esteem to add to personal coping mechanisms; and offered additional facets to the patient''s identity that countered the stigmatizing effect of receiving dialysis.Patient or Public ContributionPatients and public representatives advised on the design, research methods and tools.     

Patient perspectives on the need for implanted device information: Implications for a post‐procedural communication framework

BackgroundShared decision making and patient‐centred communication have become part of pre‐procedural decisions and perioperative care across medical specialties. However, gaps exist in patient communication about the implanted device received and the benefits in sharing information about their procedure and device.ObjectiveTo understand the patients'' knowledge of identifying information for their implanted devices and perspectives on sharing their implanted device information.MethodsFour focus groups were conducted with patients who had received a cardiac or vascular implanted device from one of the study sites within the previous 6 months. Data were transcribed and thematically analysed.ResultsFive themes emerged: lack of awareness of identifying information on implanted devices; value of information on implanted devices; varying trust with sharing device information; perceived risk with sharing device information; and lack of consensus on a systematic process for tracking implanted devices.DiscussionPatients desire post‐procedural information on their implanted device and a designated plan for longitudinal follow‐up, but lack trust and perceive risk with broadly sharing their implanted device information.ConclusionAfter receiving an implanted device, post‐procedural patient communication needs to be expanded to include identifying information on the device including the unique device identifier, how long‐term tracking will be supported and the process for notification in case of a problem with the device. This communication should also include education on how sharing device information supports patients'' long‐term health care, post‐market safety surveillance and research.Patient or Public ContributionThe research team included members who were also patients with implanted devices.     

Exploring the long‐term psychosocial impact of paediatric haematopoietic stem cell transplantation for nonmalignant diseases

IntroductionAn understanding of the long‐term psychosocial impact of paediatric haematopoietic stem cell transplantation (HSCT) for nonmalignant diseases is needed to optimize pre‐HSCT counselling, supportive care and long‐term follow‐up programmes after HSCT for this group of patients and caregivers.MethodsThis qualitative study included 14 patients who underwent transplantation for a nonmalignant disease during childhood. In‐depth interviews were held online to explore patients'' perspectives on the long‐term psychosocial impact of HSCT on their lives. The results were analysed based on the Grounded Theory approach.ResultsPatients'' median age at the time of the interview was 19 years (range: 14–49), and the median years after HSCT was 12 years (range: 3–33). Four main themes were identified: (1) doing okay, (2) experiencing persistent involvement with healthcare services, (3) influence on relationships with loved ones and (4) impact on the patient''s life course. Subthemes extracted were doing okay, feeling of being cured, health limitations, sense of vulnerability, ongoing connection to the hospital, acceptance, friendship, family relations, development of own identity, not taking life for granted, social development, impact on (school) career and thinking about the future.ConclusionsPatients reported active coping strategies and resilience after this high‐impact treatment. The data highlight the need for patient‐adjusted supportive care, indicating more need for supportive care in the long‐term outpatient clinic.Patient ContributionThis study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were presented during a patient conference day.