Supporting the Journey: A Scoping Review of Healthcare Transition Programs for Adolescents with Congenital Heart Disease

Document Type

Journal Article

Publication Date

6-25-2025

Journal

Pediatric cardiology

DOI

10.1007/s00246-025-03928-z

Keywords

Adolescent; Congenital; Heart defects; Transition

Abstract

The growing adult CHD population has created a demand for formalized transition programs from pediatric to adult cardiac care. Despite global implementation, these programs vary widely in structure, and there is limited understanding of which elements best improve clinical outcomes and quality of life. This scoping review of the literature on healthcare transition programs for children and adolescents with CHD examined various program models, identified common key concepts, and highlighted gaps in the field, providing future directions for research and program development. A comprehensive search of PUBMED/Medline, Scopus, CINAHL, and Cochrane Library (2017-2023) identified English-language original research on CHD transition programs reporting qualitative or quantitative outcomes. Outcomes were grouped into themes: medical knowledge, self-management, and successful transfer. Ten studies met the inclusion criteria. All seven studies reporting medical knowledge outcomes found an increase in patients' medical knowledge following program completion, though methods of measurement varied. Four studies reported successful transfer outcomes, while five demonstrated improvements in self-management skills. Several studies also included patient reported outcomes. While various healthcare transition models exist, each with distinct strengths and weaknesses, it is important to customize the program to the needs of the local CHD patient population and the institution providing care. Advancing care for this group requires increased resources, improved reimbursement models, stronger infrastructure, and comprehensive education and training to encourage institutions to develop programs that meet patient needs.

Department

Pediatrics

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