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

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 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

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Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities: Distinctions and challenges

“…HCT planning involves application of a framework of care that is characteristically different than the planning efforts undertaken for AEA with SHCN/disabilities and for typically developing AEA. To date, evidence is lacking to support the use of specific HCT intervention models to effect positive outcomes for all populations of AEA who are transferring their care to adult health care providers and the transition to adulthood (Parsons et al, 2022). However, there are best practice HCT recommendations for AEA during this period of transition, which are: (a) HCT service coordinator/specialist who coordinates and generates service referrals; (b) development of HCT plan that incorporates a holistic approach to providing HCT services that addresses comprehensive needs for biopsychosocial and developmental outcomes as the AEA transfers health care and progresses to adulthood; (c) acquires independence to the greatest extent possible with self‐management; (d) referrals to community‐based transition and adult services and supports; (e) promotion of the acquisition of life skills that enhances self‐determination, self‐advocacy, independence, productivity and inclusion (Betz, 2017; Betz et al, 2022; Lestishock et al, 2020; Okumura et al 2015; White et al, 2018).…”

“…Since that time, HCT has emerged with growing acknowledgment and acceptance of its service necessity for adolescents and emerging adults (AEA) with special health care needs (SHCN) and disabilities who age out of pediatric care and enter into adulthood. Consequently, pediatric professional associations have begun to address the need for clinical guidance on the provision of transfer of care and health care transition services and supports for AEA with SHCN and disabilities (Betz, 2017; John et al, 2022; Kumagai et al, 2022; Lestishock et al, 2020; Pape & Ernst, 2022; White et al, 2018) Currently, despite the proliferation of literature published in the field in recent years, evidence is lacking as to empirically supported interventions to facilitate optimal transfer of care and HCT outcomes for all adolescents with SHCN and disabilities (Parsons et al, 2022).…”

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