Self-management for youth and young adults with childhood-onset chronic conditions: A scoping review of health care transition planning literature

Authors

• Jennifer Emilie Mannino Ph.D., R.N., CNE, Molloy UniversityFollow
• Cara C. Young, The University of Texas at Austin
• Monique M. Ridosh, Marcella Niehoff School of Nursing
• Kristin Cleverley, University of Toronto, Lawrence Bloomberg Faculty of Nursing
• Lin Li, University of Toronto, Lawrence Bloomberg Faculty of Nursing
• Lynn Kysh, William Blaisdell Medical Library, University of California Davis
• Catherine A. Harwood, UT Social Work, The University of Texas at Austin
• Brooke Allemang, Child Health Evaluative Sciences, SickKids Research Institute
• Linda Tirabassi-Mathis, Outpatient Specialty Clinics, Miller Children's and Women's Hospital
• Sharon Hudson, Implementation Science & Evaluation, AltaMed Health Services Corporation
• Stephanie M. Key, School of Nursing, The University of Texas at Austin
• Benjamin C. Schwartzman, Division of General Pediatrics, Childrens Hospital Los Angeles, Keck School of Medicine, University of Southern California
• Jihye Lee, The Saban Research Institute, Children's Hospital Los Angeles
• Manu Raam, Shriners Children's Southern California
• Cecily L. Betz, Children's Hospital Los Angeles

Author Type

Faculty

Publication Date

6-27-2026

Document Type

Article

Abstract

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 pedi atric 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

DOI

https://doi.org/10.1016/j.hctj.2026.100147

Journal Title

Health Care Transitions

Volume (Issue)

4

Journal ISSN

2949-9232

Recommended Citation

Mannino, Jennifer Emilie Ph.D., R.N., CNE; Young, Cara C.; Ridosh, Monique M.; Cleverley, Kristin; Li, Lin; Kysh, Lynn; Harwood, Catherine A.; Allemang, Brooke; Tirabassi-Mathis, Linda; Hudson, Sharon; Key, Stephanie M.; Schwartzman, Benjamin C.; Lee, Jihye; Raam, Manu; and Betz, Cecily L., "Self-management for youth and young adults with childhood-onset chronic conditions: A scoping review of health care transition planning literature" (2026). Nursing: Faculty Publications. 4.
https://digitalcommons.molloy.edu/nur_facpub/4

Document Version

Publisher's PDF

Creative Commons License

This work is licensed under a Creative Commons Attribution-NonCommercial-No Derivative Works 4.0 International License.