Objective: To understand the evidence base for care interventions, implementation strategies, and between-provider communication tools among children with special healthcare needs (CSHCN) transitioning from pediatric to adult medical care services.
Data sources: We searched Ovid MEDLINE®, Ovid Embase®, the Cochrane Central trials (CENTRAL) registry, and CINAHL® to identify studies through September 10, 2021. We conducted grey literature searches to identify additional resources relevant to contextual questions.
Review methods: Using a mixed-studies review approach, we searched for interventions or implementation strategies for transitioning CSHCN from pediatric to adult services. Two investigators screened abstracts and full-text articles of identified references for eligibility. Eligible studies included randomized controlled trials, quasi-experimental observational studies, and mixed-method studies of CSHCN, their families, caregivers, or healthcare providers. We extracted basic study information from all eligible studies and grouped interventions into categories based on disease conditions. We summarized basic study characteristics for included studies and outcomes for studies assessed as low to medium risk of bias using RoB-2.
Results: We identified 9,549 unique references, 440 of which represented empirical research; of these, 154 (16 major disease categories) described or examined a care transition intervention with enough detail to potentially be eligible for inclusion in any of the Key Questions. Of these, 96 studies met comparator criteria to undergo risk of bias assessment; however only 9 studies were assessed as low or medium risk of bias and included in our analytic set. Low-strength evidence shows transition clinics may not improve hemoglobin A1C levels either at 12 or 24 months in youth with type 1 diabetes mellitus compared with youth who received usual care. For all other interventions and outcomes, the evidence was insufficient to draw meaningful conclusions because the uncertainty of evidence was too high. Some approaches to addressing barriers include dedicating time and resources to support transition planning, developing a workforce trained to care for the needs of this population, and creating structured processes and tools to facilitate the transition process.
No globally accepted definition for effective transition of care from pediatric to adult services for CSHCN exists; definitions are often drawn from principles for transitions, encompassing a broad set of clinical aspects and other factors that influence care outcomes or promote continuity of care. There is also no single measure or set of measures consistently used to evaluate effectiveness of transitions of care. The literature identifies a limited number of available training and other implementation strategies focused on specific clinical specialties in targeted settings. No eligible studies measured the effectiveness of providing linguistically and culturally competent healthcare for CSHCN. Identified transition care training, and care interventions to prepare pediatric patients and their families for transitioning from CSHCN to adult care, varied considerably.
Conclusions: Little rigorous evidence exists to inform care interventions and implementation strategies. Significant barriers impede implementation of interventions, tools, and trainings to transition CSHCN, which may be reduced in future intervention development. This review highlights the need for more rigorous studies across the diverse populations of CSHCN in order to provide clearer answers for CSHCN, their families, caregivers, providers, funders, and policymakers.