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Transitions of Care From Pediatric to Adult Services For Children With Special Healthcare Needs

Systematic Review Draft

Open for comment through Sep 24, 2021

This report is available in PDF only (Draft Report [PDF, 1.6 MB]; Appendices A-C [PDF, 932.7 KB]; Appendices D-G [PDF, 1.2 MB]).

Main Points

  • With only a single exception that showed no benefit, we found that for all outcomes and interventions the evidence was insufficient to draw conclusions because the uncertainty of evidence was too high.
  • Transition clinics may not improve hemoglobin A1C levels at 12 or 24 months in youth with type 1 diabetes mellitus compared with youth who received usual care (low-strength evidence).
  • While significant barriers exist to implement effective interventions, some approaches 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 exists for effective transition of care from pediatric to adult services for children with special health care needs (CSHCN), nor is a single measure or set of measures consistently used to evaluate effectiveness of transitions of care.
  • The literature identifies only a limited number of available trainings or other implementation strategies, generally focused on specific clinical specialties in targeted settings.
  • No included studies measured the effectiveness of providing linguistic and culturally competent healthcare for CSHCN.
  • Trainings and interventions to prepare pediatric patients and their families for transitioning CSHCN to adult care vary considerably in their components, structures, and processes.

Structured Abstract

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 healthcare services.

Data Sources. We searched Ovid Medline®, Ovid Embase®, the Cochrane Central trials (CENTRAL) registry, and CINAHL to identify studies through May, 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, 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 9,226 unique references, 417 of which represented empirical research; of these, 147 (16 major disease categories) described or examined a care transition intervention with enough detail to be potentially eligible for inclusion in any of the Key Questions. Of these, 93 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, due to the uncertainty of the evidence we found the evidence insufficient to draw meaningful conclusions. Some approaches to address 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.

Contextually, 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. A limited number of available training and other implementation strategies have been identified through the literature, generally focused on specific clinical specialties in targeted settings. None of the eligible studies measured the effectiveness of providing linguistic and culturally competent healthcare care for CSHCN. Identified transition care training, and care interventions to prepare pediatric patients and their families for transitioning CSHCN to adult care varied considerably.

Conclusions. Little rigorous evidence is available to inform care interventions and implementation strategies. Significant barriers exist to implement effective interventions, tools, and trainings to transition CSHCN. This review highlights the lack of sufficient evidence and need for more-rigorous studies across the diverse populations of CSHCN to provide clearer answers for CSHCN, their families, caregivers, providers, funders, and policymakers.