Transitional Care Interventions for Youth With Disabilities: A Systematic Review

Abstract

CONTEXT: Transition from the pediatric to the adult health care system is a complex process that should include medical, psychosocial, educational, recreational, and vocational considerations. OBJECTIVE: In this systematic review, we aim to synthesize the evidence on transitional care interventions (TCIs) to improve the quality of life (QoL) for adolescents and young adults with childhood-onset disabilities, including neurodevelopmental disorders. DATA SOURCES: Four electronic databases (Medline, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature) were searched. STUDY SELECTION: In the included studies, researchers examined TCIs for adolescents and young adults (12-24 years of age) with childhood-onset disabilities. Studies were experimental, quasi-experimental, and observational studies published in the last 26 years. DATA EXTRACTION: Two reviewers independently completed study screening, data extraction, and risk-of-bias assessment. RESULTS: Fifty-two studies were included. Five studies reported on QoL, but statistically significant improvements were noted in only 1 of these studies. Significant improvements were also found in secondary outcomes including disability-related knowledge and transitional readiness. TCIs targeted patients, families and/or caregivers, and health care providers and exhibited great heterogeneity in their characteristics and components. LIMITATIONS: Inconsistent reporting on interventions between studies hindered synthesis of the relationships between specific intervention characteristics and outcomes. CONCLUSIONS: Although there is limited evidence on the impact of TCIs on the QoL for youth with childhood-onset disabilities, there is indication that they can be effective in improving patient and provider outcomes. The initiation of transition-focused care at an early age may contribute to improved long-term health outcomes in this population.

Prioritizing a Research Agenda of Transitional Care Interventions for Childhood-Onset Disabilities

“…We conducted a modified Delphi ( 19 ) with knowledge users, researchers, and clinician experts in transitional care to narrow a set of previously identified TCIs ( 15 ). Specifically, our process included two rounds of online surveys, one large group face to face consensus meeting and a virtual planning meeting to prioritize TCIs for future evaluation and create a plan for execution.…”

“…Transitional care interventions (TCIs) are a wide range of services and interventions known to promote continuity of care, reduce significant detrimental physical and mental health outcomes, and improve the quality of life of adolescents and young adults living with childhood-onset disabilities as they age. Examples of TCIs include preparing patients and families for transition readiness, promoting information continuity amongst health professionals or case management services through the transition process ( 15 ). The paucity of research in this area poses challenges in terms of identifying and prioritizing interventions to implement and evaluate.…”

“…The paucity of research in this area poses challenges in terms of identifying and prioritizing interventions to implement and evaluate. Where evidence does exist on TCIs, most evaluation studies are descriptive in nature ( 15 ), and are lacking in rigorous design ( 16 ), valid and reliable instruments for evaluation ( 17 ) and external validity ( 18 ). Additionally, the high variability across practice settings and the siloed nature of health and social services have led to issues with reliability and transferability across settings and contexts ( 15 ).…”

“…Where evidence does exist on TCIs, most evaluation studies are descriptive in nature ( 15 ), and are lacking in rigorous design ( 16 ), valid and reliable instruments for evaluation ( 17 ) and external validity ( 18 ). Additionally, the high variability across practice settings and the siloed nature of health and social services have led to issues with reliability and transferability across settings and contexts ( 15 ). These considerations leave researchers and clinicians struggling to identify the best next steps in the selection, implementation and evaluation of TCIs for adolescents and young adults with childhood-onset disabilities.…”

Exploring the co-involvement of disabled adolescents in participatory action research; protocol for a critical interpretative synthesis

“…Since the UN Convention of Rights of the Child ( UN, 1989), it has become widely accepted that young people should be supported to share their perspectives and to have these attended to by others (Kennan et al, 2018). A partnership approach is also an expectation in research (Larsson et al, 2018;Lundy et al, 2011). Participatory action research (PAR) provides adolescents with a collaborative forum to address issues that impact them and their peers, to share opinions and expertise within the research process and to partner in the identification of priority areas for research (Kirby, 2004).…”