Systematic review of study designs and methods in health transition research for young people with intellectual disabilities

Transition for young people with intellectual disabilities from paediatric or adolescent services into adult health care services remains a difficult process for all stakeholders. The study assessed the type of interventions, the methodological approaches, study designs and location of existing published evidence in health care transitions. Methods: A systematic review utilising the PRISMA protocol with an amended quality appraisal tool to explore the nature of published evidence on health care transitions for young people. Results: Findings demonstrate that health transition research for this population lacks a robust evidence base and researchers favour exploratory studies investigating the experiential dimension of transition. The lack of involvement of young people in the studies indicates a problematic absence of genuinely participatory research. Conclusion: The study is the first systematic review of empirical studies in health transition of young people with intellectual disabilities exploring the nature of existing evidence. The results will support setting priorities for future research. What this paper adds: The study is the first systematic review of empirical studies in health transition of young people with intellectual disabilities which looked at the type of research evidence produced. It demonstrates that health transition research for this population lacks a robust evidence base and that researchers engage mainly in exploratory research about the experiences and perceptions of stakeholders, predominantly carers and staff. The absence of young people in the study design and implementation process but also the widespread absence of their voices in the studies themselves as participants is disappointing. The review also demonstrated that there was only one study investigating the effects of a transition practice. The paper will provide important systematic evidence to inform future empirical research in the field of transition for young people with ID.