Band 2, Heft 1

Introduction There is growing evidence that the health of young people with chronic health conditions deteriorates during the transfer from child-centred to adult-oriented health care. Risks include not only the deterioration of health status in general but also the occurrence of secondary diseases and adverse events. Transition programs have been implemented. However, there is a lack of evidence about whether they reduce these risks and which interventions should be principally included. Evidence-based guidelines for the transition of young people should be introduced. In this study we therefore aim to summarise actual evidence on somatic outcomes during the transition period. Methods A systematic literature review was conducted. Two independent reviewers searched in electronic databases (Cochrane, Embase, PubMed, Web of Science) for intervention studies that aimed to improve transition. Last update of search was October 31st 2018. Grey literature was also searched. Studies were included if they examined participants aged 11 years or older suffering from a chronic health condition and evaluated interventions aimed to improve somatic outcomes after transition. Controlled trials or studies with a measurement before and after intervention were considered. The certainty of evidence was assessed using the GRADE approach. Additionally, each study was graded using a modified grading scale based on GRADE. Results 28 studies met the inclusion criteria. Patients suffered from different chronic conditions such as type 1 diabetes, solid organ transplantation, inflammatory bowel disease or cystic fibrosis. Interventions had different components such as transition checklists, workshops, web-based interventions, transition plans, joint visits or transition coordinators. Outcomes included mortality and morbidity. They varied according to chronic condition. Thirteen studies showed beneficial effects in the intervention group or in post-intervention measurements. The certainty of evidence was very low. Conclusion A considerable number of studies evaluating transition interventions was identified. Transition interventions had some beneficial effects. Workshops, joint visits and longer or multidisciplinary appointments may be particularly effective components. Transition guidelines could be based on these results. However, due to the limitations of the included studies it is difficult to draw firm conclusions. More research is needed to further evaluate the effectiveness of transition interventions. It should address the deficits identified from prior studies, such as poor study design, short follow-up time or small sample sizes.

Background Transition from pediatric to adult healthcare for adolescents with chronic health conditions has emerged as a critical period influencing health outcomes. Suitable transition readiness measures are necessary to facilitate effective planning. Currently, there is little consensus about well-validated transition readiness measures. The purpose of this systematic review was to identify best practices in transition readiness measurement for adolescents and young adults with chronic health conditions. Data sources Academic databases searched included PubMed, Cumulative Index to Nursing and Allied Health Literature, Google Scholar and Athabasca University Library’s Discover. Study selection Articles were included that discussed the development and psychometric properties of transition readiness measures for adolescents and young adults (11–25 years) with chronic health conditions and/or that utilized a previously developed measure. Data extraction The primary and secondary reviewers extracted data from the selected articles as per the data extraction tool developed for this review. Results Forty-eight articles, representing 19 tools, were included in the review. Ten of the tools were disease-specific; nine were disease-neutral. According to the Cohen criteria, eight measures were “well-established assessments”. The Transition Readiness Assessment Questionnaire was deemed the best measure of transition readiness available. The literature search included only articles published in peer-reviewed journals; measures nearing completion or awaiting publication were not included. In addition, only English manuscripts were included, many from North America. Conclusions Despite national practice guidelines and ongoing policy development, there is slow movement towards achieving a gold standard or best-practice measure of transition readiness.

Introduction A quarter of a century has passed since the importance of transition from paediatric to adult care for chronically ill adolescents was highlighted by the American Society of Adolescent Health and Medicine. Despite discussions, the development of generic guidelines and some cohorting of age groups in paediatric speciality care, adolescents continue, unacceptably, to fall through the care gaps with negative clinical outcomes. Government bodies and international organisations have developed clinical practice guidelines (CPGs) for specific chronic physical illness although it remains unclear as to what extent these discuss transition from paediatric to adult care. This study systematically reviewed scientific and grey literature to determine how effectively transition has been incorporated into chronic illness specific CPGs. Methods Five bibliographical databases; Medline, Embase, PsycINFO, CINAHL and Web of Science plus an extensive grey literature search from the internet were used to identify published guidelines between 2008 and 2018 using key words adolescents, transition, guidelines, together with the names of over 20 chronic physical illnesses which require specialist to specialist care after transitioning from paediatric care. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. In addition a measure of trustworthiness for CPGs was included. Guidelines were benchmarked against a published set of Australian transition principles embodying the comprehensive recommendations from National Institute for health and Care Excellence (NICE) transition guidelines discussing key transition aspects on: a systematic and formal transition process; early preparation; transition coordinators, good communication and collaboration between health professionals; individualised transition plan, enhancing self-management and active follow up after transition. Results Initially, 1055 articles were identified from the literature searches. Eight hundred and sixty eight articles were selected for title and abstract review. One hundred and seventy eight articles were included for full text review. Ultimately, 25 trustworthy CPGs were identified and included across 14 chronic physical illnesses. Five articles exclusively discussed illness specific transition recommendations and two included all the seven key transition principles. Three provided a minimal discussion of transition to adult care due to lack of high level evidence. Follow up and evaluation was the least addressed principle with recommendations in only seven CPGs. Conclusions A limited number of chronic physical illnesses have illness specific CPGs that address transition from paediatric to adult care. The CPGs’ content emphasises the need for empirical data in order to develop quality transition recommendations for adolescents with chronic physical illness to ensure long term engagement and retention within health services.

Youth with medical complexity (YMC) are a small subset of youth who have a combination of severe functional limitations and extensive health service use. As these youth become adults, they are required to transition to adult health, education, and social services. The transition to adult services is especially difficult for YMC due to the sheer number of services that they access. Service disruptions can have profound impacts on YMC and their families, potentially leading to an unsuccessful transition to adulthood. This meta-ethnography aims to synthesize qualitative literature exploring how YMC and their families experience the transition to adulthood and transfer to adult services. An in-depth understanding of youth and family experiences can inform interventions and policies to optimize supports and services to address the needs of this population at risk for unsuccessful transition to adulthood. Using Noblit and Hare’s approach to meta-ethnography, a comprehensive search of Medline, CINAHL, Embase, PsycINFO, Social Sciences Index, and Sociological Abstracts databases, supplemented by hand searching, was conducted to identify relevant studies. Included studies focused on the transition to adulthood or transfer to adult services for YMC, contained a qualitative research component, and had direct quotes from youth or family participants. Studies were critically appraised, and data were analyzed using meta-ethnographic methods of reciprocal translation and line of argument synthesis. Conceptual data from ten studies were synthesized into six overarching constructs: (1) the nature and process of transition, (2) changing relationships, (3) goals and expectations, (4) actions related to transition, (5) making sense of transition, and (6) contextual factors impacting transition. A conceptual model was developed that explains that youth and families experience dynamic interactions between their goals, actions, and relationships, which are bounded and influenced by the nature, process, and context of transition. Despite the tremendous barriers faced during transition, YMC and their families often demonstrate incredible resilience, perseverance, and resourcefulness in the pursuit of their goals. Implications for how the conceptual model can inform practice, policy, and research are shared. These implications include the need to address emotional needs of youth and families, support families in realizing their visions for the future, promote collaboration among stakeholders, and develop policies to incentivize and support providers in implementing current transition guidelines.

Chronically ill young people must transition to the adult health care service after their 18th birthday. The transition from child centred paediatric care to the adult health care service is not simply limited to the change from familiar structures to something unknown, but includes the entire process of growing up, of individuals becoming independent from their parents and taking responsibility for their own disease management. Young people are at particular risk of losing the connection to medical care during this phase and the transition of young people with chronic conditions is associated with a high risk of declining adherence and worsening health status. Studies suggest that transition programs might be helpful, yet there is no evidence as to whether risks can be reduced or which intervention components are particularly conducive to better outcome. This study aimed to identify transition-specific interventions and evaluate their effect on the improvement of psychosocial parameters, such as health related quality of life and adherence of patients. A systematic literature review was conducted. Electronic databases (Cochrane, Embase, Pubmed, Web of Science) were searched by two independent reviewers for intervention studies aiming to improve transition. Grey literature was also searched. Studies were included if they evaluated transition-specific interventions aiming to improve psychosocial or adherence parameters of participants aged 12 years and older suffering from a chronic condition. Both controlled trials and studies with measurements before an after the intervention were included. The GRADE approach was used to assess the quality of evidence. The inclusion criteria was met by forty studies. Patients suffered from different chronic conditions, such as inflammatory bowel disease, type 1 diabetes or juvenile idiopathic arthritis. Transition interventions used several program components, such as transition coordinators, patient education programs or web-based interventions. Outcomes included quality of life, transition-specific knowledge, adherence and loss to follow up. Thirty-eight studies showed beneficial effects in the intervention group, respectively after intervention. The overall study quality was low. A large number of studies evaluating transition-specific interventions was included. Transition-specific interventions seem to have beneficial effects on psychosocial outcomes and adherence. The promotion of health literacy, appointment arrangement service and the use of technical elements (websites, SMS) seem to be particularly helpful in the transition process. As the patient population was diverse, the results can be transferred to other diseases. Even though the overall study quality was poor, it is possible to draw some conclusions. Future studies should aim to include large numbers of patients over extended periods of time in order to assess long-term outcomes.

Background This study describes developmental and service transitions during a 3-year period among young people with cerebral palsy (CP) as measured by the Rotterdam Transition Profile (RTP) and evaluates the test-retest reliability of the RTP. The RTP is a questionnaire developed to classify phases of transition across nine participation domains. Methods A three-step design was applied: Step I consisted of a translation and test-retest reliability study of the RTP, Step II was a comparison of independence between youth with and without CP and Step III was a follow-up survey of youth with CP describing changes of independence after a 3-year transition period. A sample of 103 typically developing youth were recruited for Steps I and II, and a population-based sample of 76 (response rate = 59%) youth with CP (males = 40) from South-Eastern Norway aged 16–17 years were recruited for Steps II and III. The subtypes of CP were classified as spastic unilateral (n = 30), spastic bilateral (n = 37), dyskinetic (n = 8) and ataxic (n = 1) CP. The levels of gross motor function followed the categories of the Gross Motor Function Classification System (GMFCS) as level I (n = 30), level II (n = 17), level III (n = 6), level IV (n = 8) and level V (n = 15). Results Twenty-six participants had epilepsy and 13 had gastrostomy. Forty-four of the youth with CP (response rate = 58%) responded to the 3-year follow-up survey in Step III. The test-retest study of the RTP showed excellent reliability (Kw 0.76–0.93). At baseline (Step II), the reference group was significantly more independent than the youth with CP in all the participation domains. At the 3-year follow-up (Step III), the levels of independence had increased significantly for all the participation domains in the youth with CP except for transportation and leisure. Despite increased independence during the transition period regarding health services, only 25% independently formulated their own care needs or applied for services and assistance at 19–20 years of age. Youth who responded to the RTP by a caregiver proxy more often had a diagnosis of epilepsy and/or gastrostomy and higher GMFCS levels. These individuals were significantly less independent than those who self-reported, both at baseline and at follow-up. Conclusions In conclusion, the excellent test-retest results support the use of the RTP as a tool for classifying phases of transition among youth with CP. The youth with CP were significantly less independent than their typically developing peers at baseline, yet increased their independence during a 3-year period. Those who self-reported to the RTP were generally more independent than those who proxy-reported, which supports the need to distinguish between the service needs of subgroups during the transition phase.

Background The transfer from pediatric to adult care is a key milestone for adolescents living with chronic health conditions. Over the past few decades, pediatric cardiac care has witnessed outstanding advancements leading to a dramatic increase in the number of children with congenital heart disease (CHD) surviving into adulthood. Successful transfer from pediatric to adult congenital cardiac care is critical because many adults with CHD require regular long-term cardiac care for optimal health outcomes. Objectives This study aims to (1) determine the rate of successful transfer of adolescents with CHD from pediatric to adult congenital cardiac care at the McMaster University Medical Centre (MUMC), a tertiary care level centre, and (2) to explore available patient- and context-related factors associated with unsuccessful transfer. MUMC includes both the McMaster Children’s Hospital, which offers Pediatric Cardiology services, and Adult Outpatient Services, which offers the Adult Congenital Cardiac Clinic (ACCC). Methods This is a retrospective cohort study in which all patients eligible for transfer from pediatric to adult congenital cardiac care from January 2006 to December 2012 were identified from the McMaster Children’s Hospital database. Successful transfer was defined as attendance at the ACCC within 2 years of discharge from Pediatric Cardiology. Patient and context-related variables include gender, severity of the CHD diagnosis, years since pediatric follow-up, and distance from the patient’s home to MUMC. The relationship between patient- and context-related variables available at baseline and unsuccessful transfer was assessed by univariate analysis. Results A total of 279 patients were identified, of which, 269 patients (96.4%) were successfully transferred to adult congenital cardiac care. Out of the 10 patients (3.6%) who were lost to follow-up, 8 had mild, 1 had moderate, and 1 had severe CHD. Based on the point estimates expressed as odds ratio (OR), factors that are potentially associated with a higher risk for loss to follow-up were: male gender (OR 1.8, 95% CI 0.5–7.3) and travel distance greater than 200 km to MUMC (OR 7.7, 95% CI 0.7–81.5), while moderate and severe CHD could potentially be a protective factor against loss to follow up when compared to mild CHD (OR 0.2, 95% CI 0–1.1). Discussion The medical and administrative practices that may be contributing to the high transfer rate of 96.4% include early and developmentally appropriate discussions, engaging patients and their families in cardiac care, proximity of the pediatric and adult congenital cardiac clinics, and an information pamphlet regarding the transition process, amongst others. Learning from our retrospective study we now work with the patients identified as potential high risk for loss to follow-up to understand and eliminate barriers and to implement sustainable methods that will ensure a successful transition to adult health care for all patients with CHD.

Background The process of transitioning from a pediatric to adult health models of care is a significant challenge associated with heightened morbidity and mortality, particularly for patients with medical complexity. Methods Our institution has no formal standardized transition services for patients transitioning from pediatric to adult models of care. The Transition Task Force was created as a community of practice to support interprofessional teams in creating a standard, yet individualized, approach to pediatric to adult transition across multiple departments of an academic center. Results The Transition Task Force has been meeting for approximately 4 years, and almost three-quarters of participants report that participation resulted in changes to their clinical process, in spite of recognition of common barriers to effective transition. Conclusions The development of a transition-focused community of practice can effectively support implementation of quality improvement projects collaboratively in both a standardized and individualized fashion.