Mirror meetings as a tool to enhance professionals' awareness of the lived experiences of young people with inflammatory bowel disease.

During mirror meetings, professionals were confronted with the experiences of young people (YP) with inflammatory bowel disease to encourage them to improve their transitional care arrangements. The mirror meetings were held under guidance of an independent moderator. YP conversed about their transition experiences, while health care providers listened without interfering. Meetings were audio-recorded and summarized. Qualitative thematic analysis was conducted. Thirty-two YP participated in six mirror meetings with 26 professionals from paediatric and adult care. Professionals received concrete suggestions for improving their transitional care arrangements. These were about holistic care, tailored to individual needs and preferences, attention for mental health and the role of parents and peers. Advice given by YP matched transitional care guidelines' recommendations. Mirror meetings are a powerful tool to enhance professionals' awareness of YP's needs.

Impairments and comorbidities in adults with cerebral palsy and spina bifida: a meta-analysis.

Introduction: Aging with a childhood-onset disability, such as cerebral palsy (CP), spina bifida (SB), and muscular diseases (MD), comes along with significant impairments and comorbidities. Despite the increasing evidence an overall picture is lacking. This study aimed to review the literature about adults with CP/SB/MD and impairments and comorbidities to perform a meta-analysis. Materials and methods: Embase, PubMed, Cinahl, and Google Scholar were searched (2000-2020). Search terms included adults with one of the aforementioned disabilities combined with impairments and comorbidities. If specific impairments or comorbidities were reported by at least four studies, these were included in the study. Pooled prevalence (95% Confidence Interval) of impairments/comorbidities were calculated. Results: The search yielded 7,054 studies of which 95 were included in the meta-analysis (64 CP, 31 SB, 0 MD). In total estimates were calculated for 26 (CP) and 11 (SB) outcomes. In adults with CP, pain [56.4% (95%CI 48.8-63.8)], deformities [44.2% (95%CI 12.9-78.4)], intellectual disability [37.2% (95%CI 26.7-48.3)], and fatigue [36.9% (95%CI 24.6-50.1)] were most prevalent; renal disease [3.0% (95%CI 2.1-4.2)] and stroke/rheumatic diseases {4.8% (95%CI 3.4-6.5; 4.8% (95%CI 1.5-9.9)] respectively} were least prevalent. For adults with SB, bladder incontinence [60.0% (95%CI 50.5-69.2)], bowel incontinence [49.2% (95%CI 34.5-64.0)], pain [44.1% (95%CI 27.4-61.5)], and sleeping problems [30.3% (95%CI 4.7-65.8)] were most prevalent; diabetes [4.8% (95%CI 2.8-7.3)] and renal disease [8.7% (95%CI 2.0-19.9)] were least prevalent. The included studies showed large heterogeneity. Conclusions: More research is needed to study health issues in adults with MD. Adults with CP or SB deal with a variety of health issues. More attention for the mental health of these adults is needed. There also is a need for accessible and adequate screening, preventive measures and clinical follow-up.

The added value of transition programs in Dutch diabetes care: A controlled evaluation study.

PURPOSE: The desirability of evaluating transition programs is widely acknowledged. This study aimed to explore the added value of transitional care investments for young adults with type 1 diabetes mellitus. DESIGN AND METHODS: Based on qualitative data, two groups of diabetes teams were created through cluster analysis: paying more (HI-ATT) versus less attention (LO-ATT) to transitional care. Retrospective controlled evaluation included chart reviews on healthcare use and clinical outcomes; and a survey on young adults' experiences, satisfaction with care, and self-management skills. RESULTS: Data from 320 patients in fifteen diabetes teams were collected; 123 young adults (38.4%) completed a questionnaire. Self-reported outcomes showed that young adults treated by a HI-ATT team felt better prepared for transfer (p < .05). Self-management outcomes did not differ between groups. HI-ATT teams had more scheduled consultations in the year after transfer (p < .05); only 10.6% of all measurements had reached targeted HbA1c scores. CONCLUSIONS: Current transitional care investments in Dutch diabetes care did not lead to notable improvements in experiences and outcomes, except for preparation for transfer. The period after transfer, however, is just as important. Attention is required for parent involvement. PRACTICE IMPLICATIONS: Transitional care investments should extend beyond the transfer. By educating young adults about the importance of regular clinic attendance and introducing additional person-centered consultations in adult care, nurses may help ensure continuity of care. Nurses could also introduce support programs for parents to prepare for the transition and their change in role, taking into account their continuing partnership.

Active involvement of young people with T1DM during outpatient hospital consultations: Opportunities and challenges in transitional care services.

OBJECTIVE: Little is known about active involvement of young people (YP) with type 1 diabetes (T1DM) in transitional care. This study aims to gain insight into patient-provider interactions during outpatient hospital consultations. METHODS: Semi-structured observations (n = 61) of outpatient consultations with YP with T1DM (15-25 years) treated in 12 hospitals in the Netherlands. The consultations concerned pediatric care (n = 23), adult care (n = 17), and joint consultations (n = 21). Thematic data analysis focused on whether professionals engaged in open, in-depth conversations; used motivational interviewing techniques; involved YP in shared decision-making; and addressed non-medical topics. RESULTS: Apart from some good examples, the healthcare professionals generally had difficulty interacting adequately with YP. They paid little attention to the YP's individual attitudes and priorities regarding disease management; non-medical topics remained generally underexposed. Conversations about daily life often remained shallow, as YP's cues were not taken up. Furthermore, decisions about personal and health-related goals were often not made together. CONCLUSION: By adopting a more person-centered approach, professionals could empower YP to take an active role in their diabetes management. PRACTICE IMPLICATIONS: Using a structured conversation model combined with a tool to encourage YP's agenda-setting and shared decision-making is recommended for more person-centered transitional care in T1DM.

Aging With Cerebral Palsy: A Photovoice Study Into Citizenship.

Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights for Persons with Disabilities (CRPD), the meaning of citizenship is formed by the person themselves. The present study aimed to gain insight into what citizenship means for adults with CP 40 years or older and what is needed to support and pursue their citizenship to improve person-centered rehabilitation which can facilitate this process. Methods: Adults with CP (>40 years) without intellectual disability were recruited from medical records of a large rehabilitation center to participate in a qualitative study using the photovoice method. Participants were asked to take photos of objects or life situations that constituted citizenship for them; these photos were then the prompts for the semi-structured interviews that were held face-to-face at their homes. Background and clinical characteristics were gathered using a short face-to-face questionnaire. Data were analyzed through inductive thematic analysis. Results: Nineteen adults participated [mean age (SD) 57.8 (9.4) years (range 44-79), six men]. From the analysis four themes emerged: (a) Meanings of citizenship; (b) Citizenship: Facilitator and barriers; (c) Paradoxes of support and participation; and (d) Future. Furthermore, next to the ability to participate in society without restrictions, sense of belonging was reported to be an important aspect of "meanings of citizenship." The physiotherapist was perceived as an important health professional to maintain physical activity and deal with the impact of aging with CP on daily activities. Complex healthcare and support services regulations and aging affected citizenship negatively. Conclusion: Middle-aged and older adults with CP view citizenship as the ability to participate and belong in society. To optimize their citizenship the challenges and individual needs must be seen and supported by person-centered rehabilitation and support services. Simplification of complex healthcare and services regulations can further improve citizenship.

The impact of type 1 diabetes on young adults' health-related quality of life.

BACKGROUND: Young adulthood is a challenging period for people with diabetes mellitus type 1 (T1DM) as they are facing multiple life transitions while managing a demanding disease. This poses a risk for impaired health-related quality of life (HRQOL). We assessed HRQOL in a cohort of young adults with T1DM in the Netherlands, and compared outcomes with those of Dutch norm groups of healthy young adults and young adults with a chronic disease. METHODS: We analyzed data collected in a larger evaluation study on transitional care for young adults with T1DM in a nationwide sample in the Netherlands, including twelve participating hospitals. These data had been obtained from online questionnaires completed by young adults with T1DM after they had transferred to adult care. HRQOL was self-reported with the Pediatric Quality of Life Inventory for young adults (PedsQL-YA). RESULTS: One hundred and sixty-five young adults with T1DM participated (44.2% response); and they scored significantly worse than did healthy peers on all domains of HRQOL, except social functioning. Particularly, functioning at school or work was worse than that of the norm group. The study group's HRQOL-scores were comparable to norm scores of young adults with chronic diseases, although the physical and social functioning of young people with T1DM was better. One quarter (26.1%) of all young adults with T1DM reported fatigue. CONCLUSIONS: During transition to adulthood, young adults with T1DM struggle to maintain a balance between the demands of managing a disease and their life. Many of them encounter problems at work or school, and suffer from fatigue. These findings underscore the need to regularly assess HRQOL, and to discuss work- and education-related issues in clinical practice.

Value of an outpatient transition clinic for young people with inflammatory bowel disease: a mixed-methods evaluation.

OBJECTIVE: Developing and evaluating effective transition interventions for young people (16-25 years) with inflammatory bowel disease (IBD) is a high priority. While transition clinics (TCs) have been recommended, little is known about their operating structures and outcomes. This study aimed to gain insight into the value of a TC compared with direct handover care. DESIGN: Controlled mixed-methods evaluation of process outcomes, clinical outcomes and patient-reported outcomes. SETTING: Two outpatient IBD clinics in the Netherlands. PARTICIPANTS: Data collection included: semistructured interviews with professionals (n=8), observations during consultations with young people (5×4 hours), medical chart reviews of patients transferred 2 to 4 years prior to data collection (n=56 in TC group; n=54 in control group) and patient questionnaires (n=14 in TC group; n=19 in control group). OUTCOMES: Data were collected on service structures and daily routines of the TC, experienced barriers, facilitators and benefits, healthcare use, clinical outcomes, self-management outcomes and experiences and satisfaction of young people with IBD. RESULTS: At the TC, multidisciplinary team meetings and alignment of care between paediatric and adult care providers were standard practice. Non-medical topics received more attention during consultations with young people at the TC. Barriers experienced by professionals were time restrictions, planning difficulties, limited involvement of adult care providers and insufficient financial coverage. Facilitators experienced were high professional motivation and a high case load. Over the year before transfer, young people at the TC had more planned consultations (p=0.015, Cohen's d=0.47). They showed a positive trend in better transfer experiences and more satisfaction. Those in direct handover care more often experienced a relapse before transfer (p=0.003) and had more missed consultations (p=0.034, Cohen's d=-0.43) after transfer. CONCLUSION: A TC offer opportunities to improve transitional care, but organisational and financial barriers need to be addressed before guidelines and consensus statements in healthcare policy and daily practice can be effectively implemented.

Patterns of social participation among older adults with disabilities and the relationship with well-being: A latent class analysis.

AIM: Living with a chronic condition or a disability at older age impacts social participation. Social connections and social activities seem interrelated leading to heterogeneous patterns in social participation. The aim of this study was to identify a typology in social participation among older adults with disabilities, and to relate this typology to their background characteristics and well-being measures. METHODS: A total of 1775 older adults with disabilities or chronic conditions aged 65-97 were sampled from a nationwide panel study in the Netherlands. Social participation was assessed by various measures related to social connections, social informal activities, voluntary work, effort to increase social participation, and online social participation. A latent class analysis was carried out to identify a typology of social participation. Differences between these classes were explored with multinomial regression analyses and pairwise comparisons. RESULTS: Four classes were found: social withdrawers (22.5%, n = 399), proximate social dwellers (14.5%, n = 257), moderately active social dwellers (37.2%, n = 660) and pro-active social dwellers (25.9%, n = 459). Background characteristics, such as living alone and severity of disability, differed significantly among classes. Regarding well-being measures, it appeared that pro-active social dwellers had the most positive scores. Social withdrawers were most prone to reduced life satisfaction and health related quality of life and increased loneliness and experienced participation restrictions. CONCLUSIONS: A typology with four patterns based on a wide spectrum of social participation aspects in older adults with disabilities was identified. This typology may help to assess the risk for reduced well-being of older adults with disabilities.

Controlled evaluation of a transition clinic for Dutch young people with cystic fibrosis.

BACKGROUND: Transition clinics (TCs) are advocated as best practice to support young people with cystic fibrosis (CF) during transition to adulthood and adult care. We aimed to research the functioning of a TC for young people with CF compared with direct hand-over care and to evaluate whether those treated at the TC have better transfer experiences and outcomes compared with the control group. METHODS: Mixed-methods retrospective controlled design, including interviews with professionals, observations of clinics, chart reviews (at four measurement moments), and patient surveys. Qualitative data analysis focused on organization and daily routines, and barriers and facilitators experienced. Young people's transfer experiences, self-management, health care use, and clinical outcomes were assessed quantitatively. RESULTS: The most notable feature distinguishing the TC and direct hand-over care comprised joint consultations between pediatric and adult care professionals in the former. A transition coordinator was considered essential for the success of the TC. The main barriers were lack of time, planning, and reimbursement issues. Young people treated at the TC tended to have better transfer experiences and were more satisfied. They reported significantly more trust in their adult care professionals. Their self-management-related outcomes were less favorable. CONCLUSIONS: The TC had several perceived benefits and showed positive trends in transfer experiences and satisfaction, but no differences in health-related outcomes. Structured preparation of young people, joint consultations with pediatric and adult care professionals, and better coordination were perceived as facilitating elements. Further improvement demands solutions for organizational and financial barriers, and better embedding of self-management interventions in CF care.

Social participation and psychosocial outcomes of young adults with chronic physical conditions: Comparing recipients and non-recipients of disability benefits.

BACKGROUND: Little is known about any differences between young people with chronic physical conditions who do and do not apply for disability benefits in young adulthood for providing insights for future policy and rehabilitation care. OBJECTIVE: We aimed to identify predictors during adolescence of receiving disability benefits in young adulthood and to compare recipients and non-recipients of benefits in social participation and psychosocial outcomes in young adulthood. METHODS: Follow-up study of 18 to 25 year olds with various chronic conditions who at adolescent age completed a web-based survey (n=518; T0). The outcome was receiving disability benefits (yes or no). Associations with background characteristics, social participation, and impact of the chronic condition were explored with stepwise multivariate modelling, using T0 variables. Differences between recipients and non-recipients were explored using chi-square tests and t-tests. RESULTS: Receiving disability benefits in young adulthood was associated with greater extent of physical disability, receiving less special education, absenteeism at school/work, and low health-related quality of life during adolescence. In young adulthood, recipients of benefits reported higher perceived impact of the chronic condition on their school/work career and lower quality of life than non-recipients. Social participation varied across domains. CONCLUSION: This study provides important insights into the characteristics of a vulnerable subgroup of young people with chronic physical conditions. Disability benefit recipients experienced more impact of their chronic condition and reported a lower health-related quality of life over time than non-recipients. Rehabilitation professionals are encouraged to use patient-reported outcomes to address the lived experiences and screen the need for psychosocial support of this vulnerable subgroup of young people with chronic physical conditions.

Evaluating outpatient transition clinics: a mixed-methods study protocol.

INTRODUCTION: To support young people in their transition to adulthood and transfer to adult care, a number of interventions have been developed. One particularly important intervention is the transition clinic (TC), where paediatric and adult providers collaborate. TCs are often advocated as best practices in transition care for young people with chronic conditions, but little is known about TC models and effects. The proposed study aims to gain insight into the added value of a TC compared with usual care (without a TC). METHODS AND ANALYSIS: We propose a mixed-methods study with a retrospective controlled design consisting of semistructured interviews among healthcare professionals, observations of consultations with young people, chart reviews of young people transferred 2-4 years prior to data collection and questionnaires among the young people included in the chart reviews. Qualitative data will be analysed through thematic analysis and results will provide insights into structures and daily routines of TCs, and experienced barriers and facilitators in transitional care. Quantitatively, within-group differences on clinical outcomes and healthcare use will be studied over the four measurement moments. Subsequently, comparisons will be made between intervention and control groups on all outcomes at all measurement moments. Primary outcomes are 'no-show after transfer' (process outcome) and 'experiences and satisfaction with the transfer' (patient-reported outcome). Secondary outcomes consider clinical outcomes, healthcare usage, self-management outcomes and perceived quality of care. ETHICS: The Medical Ethical Committee of the Erasmus Medical Centre approved the study protocol (MEC-2014-246). DISSEMINATION: Study results will be disseminated through peer-reviewed journals and conferences. The study started in September 2014 and will continue until December 2016. The same study design will be used in a national study in 20 diabetes settings (2016-2018).

Exploring effectiveness and effective components of self-management interventions for young people with chronic physical conditions: A systematic review.

OBJECTIVE: To systematically explore the effectiveness and effective components of self-management interventions. METHODS: Study selection criteria were: Original articles in English published between 2003 and 2015; focusing on youth with chronic conditions; describing self-management interventions; with clear outcome measures; using RCT design. The random effects analysis was applied in which standardized mean differences per study were calculated. RESULTS: 42 RCTs were included. Interventions focused on medical management, provided individually in clinical settings or at home by mono-disciplinary teams showed a trend in improving adherence. Interventions delivered individually at home by mono-disciplinary teams showed a trend in improving dealing with a chronic condition. CONCLUSIONS AND PRACTICAL IMPLICATIONS: Adherence could be improved through interventions focused on medical management, provided individually in a clinical or home setting by a mono-disciplinary team. Interventions focused on dealing with a chronic condition might be provided individually, through telemedicine programs facilitating peer-support. These intervention elements seemed effective irrespective of diagnosis, and may therefore act as good starting points for further research into and for improvement of self-management support for youth with chronic conditions in pediatric care. Results underlined the need to systematically develop and evaluate self-management interventions, since this may provide more evidence for effectiveness and effective intervention components.

Experiences with and Outcomes of Two Interventions to Maximize Engagement of Chronically Ill Adolescents During Hospital Consultations: A Mixed Methods Study.

Improving patient-provider communication during hospital consultations is advocated to enhance self-management planning and transition readiness of adolescents with chronic conditions. This longitudinal mixed methods study evaluates the implementation and the outcomes of independent split-visit consultations and individual transition plans by 22 hospital teams participating in the Dutch Action Program 'On Your Own Feet Ahead!'. The interventions raised awareness in adolescents and professionals, improved adolescents' display of independent behaviors and led to more discussions about non-medical issues. Successful implementation required a team-based approach and clear explanation to parents and adolescents. Pediatric nurses played a pivotal role in improving transitional care.

Recording and accounting for stakeholder involvement in systematic reviews.

OBJECTIVES: The use of stakeholders in systematic reviews is increasingly valued, but their influence on the systematicity of the review is often unclear. The aim of this study was to describe some of the processes of involvement of stakeholders and to demonstrate a Tool for Recording and Accounting for Stakeholder Involvement (TRASI). METHODS: We demonstrate the TRASI in two worked examples. In one project, the reviewers collaborated with the end-user and an expert during the literature search. In the other project, experts were consulted to generate keywords before searching the literature. RESULTS: In the first project, disagreements about keywords to identify studies for the research topic were solved by informal discussion. In the second project, difficulties arose in reaching agreement between experts and reviewers about the core construct and the meaningful keywords associated with it. DISCUSSION: The TRASI aids researchers to systematically and transparently account for the decisions taken. The TRASI supports information specialists and librarians to shape the search strategy to match the objectives of the review. CONCLUSIONS: We propose the TRASI as a first step in resolving the challenges of detecting and reconstructing stakeholder influences. Potential new applications of the TRASI are discussed.

Self-management interventions for young people with chronic conditions: A systematic overview.

OBJECTIVE: To provide a systematic overview of self-management interventions (SMI) for young people with chronic conditions with respect to content, formats, theories, and evaluated outcomes. METHODS: Embase, Medline, PsycINFO, Web-of-Science, CINAHL, and Cochrane were searched. Reviews' reference lists were scrutinized. Selected studies were: Original research articles in English published between 2003 and March 2014; about the evaluation of SMI for 7 to 25-year-olds with somatic chronic conditions/physical disabilities; with clear outcomes and intervention descriptions. The classification of medical, role and emotion management served to review content. Formats, theories, and evaluated outcomes were summarized. RESULTS: 86 studies were reviewed. Most aimed at medical management and were unclear about theoretical bases. Although a variety of outcomes was evaluated and the distribution over self-management domains was quite unpredictable, outcomes conceptually related to specific content. A content-based framework for the evaluation of self-management interventions is presented. CONCLUSIONS AND PRACTICE IMPLICATIONS: SMI relate to self-management tasks and skill-building. Yet, conceptualizations of self-management support often remained unclear and content focuses predominantly on the medical domain, neglecting psycho-social challenges for chronically ill young people. Future evaluations should match outcomes/themes to content and characteristics. Our framework and overview of SMI characteristics and outcomes may assist clinicians in providing self-management support.

Young adults' experiences and satisfaction with the transfer of care.

PURPOSE: Transition of care of adolescents with chronic conditions is a critical area for clinicians. Patient-reported outcomes may provide important information on the quality of services. This cohort study examines young adults' experiences and satisfaction with the transfer to adult care and explores associations with patient characteristics. METHODS: Follow-up of 518 young adults (18-25 years) with various chronic conditions who completed a Web-based survey in 2006 (response rate, 52%). Outcome measures were the 18-item On Your Own Feet Transfer Experiences Scale (α = .93) and satisfaction with the transfer process (visual analog scale). Associations with demographic and health care-related variables, health-related quality of life, and self-management were explored with stepwise multivariate modeling, using past (2006-T0) and current (2012-T1) variables. RESULTS: Of the respondents, 315 (65%) had transferred, while 10% was still in pediatric care and 25% was not in treatment anymore. Twenty percent rated their transfer as unsatisfactory, 50% felt prepared at the time of transfer, and 24% had met their adult-centered provider in advance. Men were more positive about their experiences and rated satisfaction higher than did women. Patient-centeredness of the adult health-care provider was the most important determinant for experiences (ß = .29). Higher self-efficacy at T1 was associated with more positive experiences but not with higher satisfaction. The latter was higher for those transferred within the same hospital (ß = .28). CONCLUSIONS: The On Your Own Feet Transfer Experiences Scale is a useful instrument to measure transfer experiences. The importance young adults attach to good relations with their new provider stresses the necessity of early involvement of and good collaboration with adult care.

Lagging behind or not? Four distinctive social participation patterns among young adults with chronic conditions.

PURPOSE: Typical childhood and adolescent development and acquiring self-management skills are crucial for a satisfying adult life and autonomy in social participation. The aims of this study were to identify patterns of autonomy in social participation and to explore differences between these patterns. METHODS: Adolescents with various chronic conditions participating in a survey in 2006 (T0) were re-invited for a follow-up study (T1) in 2012. The young adults (18-25 years of age) assessed self-management skills, their condition's impact on school or work, health-related quality of life (HRQoL), and social participation in various domains. Patterns were identified through cluster analysis. Differences between patterns were analyzed in bivariate and multivariate analyses. RESULTS: Compared with healthy age-mates, our sample (n = 483) generally lagged behind in social participation. Four patterns emerged: typical developers, financially secure laggers, slow developers, and outgoing laggers. The patterns differed regarding gender, educational level, attending special education, having disability benefits, and degree of physical limitations. Groups with a higher level of autonomy in social participation did not necessarily have higher HRQoL but did report higher self-efficacy and independence at both measurements. CONCLUSIONS: Autonomy in some participation domains can coincide with a lack of autonomy in others. In addition, better social participation does not necessarily correlate with higher HRQoL, or vice versa. Yet, more social participation was associated with more self-efficacy and independence. Our results emphasize that there is no standardized approach. Clinicians should take care to address all life areas in clinical practice to screen patients' lived experiences and the need for social and self-management support.

'Skills for growing up': supporting autonomy in young people with kidney disease.

BACKGROUND AND OBJECTIVES: End-stage kidney disease (ESKD) may interfere with children's developmental task of acquiring autonomy and participation. The Skills for Growing Up tool encourages normal development towards independence and autonomy during paediatric rehabilitation. This study aimed to adapt this self-management tool for use in paediatric nephrology, and to test whether its use is feasible in daily practice. DESIGN AND PARTICIPANTS: A Delphi study was conducted among patients, their parents, professionals and experts to adjust the tool for use in nephrology. Feasibility was studied through individual and group interviews with professionals in all Dutch paediatric nephrology centres. RESULTS: Agreement was reached on the areas of social participation and medical management of ESKD. Compared with the original, the new instrument holds considerable more attention for autonomy in the renal healthcare area; for example, dealing with medication and transplantation. Professionals used and appreciated the tool, but the paper form was seen to limit feasibility. CONCLUSIONS: Making the tool available online is important. The challenge for professionals is to move beyond the focus on medical management and to consider developmental tasks when coaching their patients into adulthood. APPLICATION TO PRACTICE: The Skills for Growing Up-Nephrology (SGU-N) tool is a promising instrument for use by professionals in paediatric nephrology. Its use can help young people achieving autonomy and may contribute to their successful transition to adulthood and adult care.

Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL.

BACKGROUND: The Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD) develop self-management skills. Fellow patients already treated in adult care (hereafter referred to as 'buddies') organise the day-to-day program, run the camp, counsel the attendees, and also participate in the activities. The attendees are young people who still have to transfer to adult care. This study aimed to explore the effects of this specific form of peer-to-peer support on the self-management of young people (16-25 years) with ESRD who participated in Camp COOL (CC) (hereafter referred to as 'participants'). METHODS: A mixed methods research design was employed. Semi-structured interviews (n = 19) with initiators/staff, participants, and healthcare professionals were conducted. These were combined with retrospective and pre-post surveys among participants (n = 62), and observations during two camp weeks. RESULTS: Self-reported effects of participants were: increased self-confidence, more disease-related knowledge, feeling capable of being more responsible and open towards others, and daring to stand up for yourself. According to participants, being a buddy or having one positively affected them. Self-efficacy of attendees and independence of buddies increased, while attendees' sense of social inclusion decreased (measured as domains of health-related quality of life). The buddy role was a pro-active combination of being supervisor, advisor, and leader. CONCLUSIONS: Camp COOL allowed young people to support each other in adjusting to everyday life with ESRD. Participating in the camp positively influenced self-management in this group. Peer-to-peer support through buddies was much appreciated. Support from young adults was not only beneficial for adolescent attendees, but also for young adult buddies. Paediatric nephrologists are encouraged to refer patients to CC and to facilitate such initiatives. Together with nephrologists in adult care, they could take on a role in selecting buddies.

The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents.

BACKGROUND: Discrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL self-reports of adolescents with chronic conditions and those of their parents differ. METHODS: A cross-sectional survey was conducted among adolescents suffering from chronic conditions and their parents. Socio-demographic and disease-related characteristics were collected and information about consequences of the chronic condition was assessed. HRQoL was measured with KIDSCREEN-10 and DISABKIDS condition generic measure (DCGM-10). Agreement was analysed through defining a threshold of agreement based on half of the standard deviation of the HRQoL score with the highest variance. Agreement occurred if the difference between adolescent and parent scores was less than or equal to half of the standard deviation. Intra-class correlation coefficients and Bland-Altman plots were also computed. The characteristics associated with direction of disagreement were statistically tested with one-way ANOVA and Chi-square tests. RESULTS: 584 paired HRQoL scores were obtained. Ratings from both adolescents and parents were high, compared to European norm data. Differences between adolescents and parents were statistically significant, yet relatively small. Disagreement existed in both directions: in 24.5% (KIDSCREEN-10) and 16.8% (DCGM-10) of the cases adolescents rated their HRQoL lower than did their parent, while in 32.2% (KIDSCREEN-10) and 31.7% (DCGM-10) of the cases the opposite was true. Adolescent's age, educational level and type of education, parent's educational level, number of hospital admissions and several other disease-related factors influenced direction of disagreement. CONCLUSIONS: In a reasonable proportion of cases the adolescent and parent agreed on the adolescent's HRQoL (43-51% of the cases) and most disagreement tended to be minor. Thus, the proxy problem may be smaller than presented in the literature and its extent may differ per population. As adolescents are expected to become partners in their own health care, it is recommended to focus on adolescents' own perceptions of HRQoL.