Abstract
AbstractIntroductionA 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.MethodsFive 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.ResultsInitially, 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.ConclusionsA 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.
Highlights
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
This study systematically reviewed scientific and grey literature to determine how effectively transition has been incorporated into chronic illness specific clinical practice guidelines (CPGs)
We considered a number of less prevalent chronic illnesses that require specialist to specialist care, as taken together rarer chronic illnesses make up a significant proportion of transitioning patients
Summary
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. A quarter of a century ago the American Society of Adolescent Health and Medicine highlighted the critical importance of a comprehensive transition care process from paediatric to adult care for Adolescents and Young Adults (AYAs) with chronic and complex paediatric conditions. Since transition was first defined, much has been written about the challenges AYAs face during transition and the need to develop innovative transition programs to strengthen the transition and transfer process [2, 3] These proactive approaches are necessary, especially when the increasing numbers of young people with chronic illness transitioning from paediatric to adult care is considered. AYAs with chronic illness confront the risk of developing adverse outcomes of their chronic conditions that can lead to both acute and chronic morbidity [24,25,26,27]
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