Self-management interventions to improve health outcomes in youth living with congenital heart disease: a systematic review and narrative synthesis

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AIMS: Congenital heart disease (CHD) presents lifelong challenges that require effective self-management skills, particularly for youth transitioning to adulthood. This systematic review evaluates the impact of self-management interventions, grounded in self-efficacy, on both health and patient-reported outcomes in youths with CHD. METHODS AND RESULTS: Adhering to Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines, we conducted a systematic review and registered the protocol in PROSPERO. We included interventional studies targeting youth aged 15-24 years with CHD that employed self-management interventions based on self-efficacy. Comprehensive searches were performed in Ovid MEDLINE, Ovid EMBASE, CINAHL, the Cochrane Central Register of Controlled Trials, the Cochrane Database of Systematic Reviews, and Scopus from January 1973 to March 2024, with an update to include studies published until December 2024. Two reviewers independently screened titles, abstracts, and full texts, resolving disagreements by consensus. Data extraction followed Template for Intervention Description and Replication guidelines, and risk of bias was assessed using the Cochrane Risk of Bias in Non-Randomized Studies of Interventions and Risk of Bias 2 tools. Out of 54 potential studies, 4 met the eligibility criteria, representing 150 patients aged 16-19 years. The studies reported improvements in condition-related knowledge, self-management skills, and social support, although data on clinical health outcomes were limited. A narrative synthesis of the selected interventions was performed. CONCLUSION: Self-management interventions using self-efficacy frameworks show promise for improving patient-reported outcomes among youth with CHD. However, there is a scarcity of data on their impact on health outcomes. Further research is needed to develop and implement interventions tailored to this population, potentially improving both self-management and clinical outcomes. REGISTRATION: PROSPERO: CRD42024499008.

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