UC Davis

Objective: To determine the extent to which self-management has been investigated and reported in literature focused on the transition from pediatric to adult healthcare for youth and young adults with childhood-onset chronic conditions (CCCs). Introduction: An estimated 1.2 million youth with CCCs are expected to enter adulthood annually in the United States. As these youth transition from pediatric to adult health systems, they are at risk for experiencing critical gaps in care continuity and adverse health outcomes. Health care transition models have emerged to address these gaps, with self-management recognized as a critical component of successful transition. Inclusion criteria: The included literature addressed self-management in the context of the transition from pediatric to adult health care for youth and young adults (aged 9-35 years) with CCCs. Results were limited to English-language, peer-reviewed primary research articles. Methods: A comprehensive search of six databases (MEDLINE, Embase & Embase Classic, CINAHL Complete, PsycINFO, Cochrane CENTRAL, and Web of Science Core Collect) was completed in November 2024. Each record was screened, assessed for eligibility, and extracted by two independent reviewers using the Covidence platform. Data were analyzed and presented using descriptive statistics. Results: A total of 640 peer-reviewed articles were included. Articles were published between 1989 and April 2025, with the majority (85%) being published post-2014 and originating from the United States (51%). Most studies employed cross-sectional designs (78%) and quantitative methods (61%). Only 89 studies involved an intervention. Study participants included youth or young adults (57%), providers (36%), parents/caregivers (22%), or a combination of these groups (34%). Studies primarily focused on youth with physical conditions (84%) or a combination of condition types (9%). Studies focused solely on intellectual/developmental disabilities (5%) and mental health conditions (<1%) were notably underrepresented. Self-management was primarily examined in relation to condition management only (77%), with 23% of the studies also addressing social and/or community-based outcomes. Conclusions: This scoping review reveals trends and gaps in the health care transition literature. Key gaps include the paucity of research on self-management in youth with intellectual/developmental disabilities and mental health conditions, limited evidence on post-transfer outcomes, and inconsistent approaches to measuring and defining self-management.