JMIR Publications

ABSTRACT

Background:

Growing up in a digital era, adolescents and young adults with complex congenital heart disease (CHD) may benefit from eHealth interventions, particularly when early signs of deterioration or challenges in self-management arise. Developing effective self-management skills is crucial for this population, particularly during the transition from pediatric to adult health care. eHealth has emerged as an innovative way to foster self-management skills in communication with healthcare providers.

Objective:

This systematic review aimed to synthesize the content, theoretical perspectives, outcomes, and effectiveness of eHealth interventions targeting adolescents and young adults with complex CHD that involve interaction with healthcare professionals.

Methods:

This systematic review was conducted in accordance with the Cochrane Handbook for Systematic Review of Interventions. The reporting of this review followed the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A priori protocol was registered in PROSPERO (CRD 42023400211). A comprehensive bibliographic search was conducted across the following databases: MEDLINE All, Embase, PsycINFO, Education Resources Information Center (ERIC), Cumulative Index of Nursing and Allied Health Literature (CINAHL), and Web of Science Core Collection.

Results:

The searches yielded 4,698 studies. After removing duplicates, 2,737 records were screened by title and abstract against predefined inclusion criteria. Ultimately, seven controlled studies were included; all evaluated educational interventions to improve disease understanding, self-management, and transition readiness in adolescents and young adults with CHD. However, the content, delivery mode, and target outcomes varied in the interventions. The delivery formats of the eHealth interventions involving healthcare professionals varied across studies, from individual approaches (e.g., personalized feedback, one-to-one sessions, and individualized tracking tools) to group-oriented approaches (e.g., peer support, group discussions, or sheared learning components). Theoretical foundations were lacking in the included studies. Four studies reported statistically significant improvements in the eHealth intervention groups regarding disease-specific knowledge, self-efficacy, psychosocial outcomes, as well as reductions in stress and increases in physical activity.

Conclusions:

eHealth interventions that incorporated healthcare professionals’ interactions with adolescents and young adults with CHD were associated with significant improvements in disease-specific knowledge, self-efficacy, stress reduction management, physical activity and psychosocial outcomes. However, the evidence remains inconsistent and limited by heterogeneity, absence of theoretical grounding, and high dropout rates. Future research should be theory-driven, user-centered, and co-designed with adolescents and young adults with CHD and healthcare professionals from the initial project phase to ensure relevance, foster engagement, and promote long-term sustainability. Standardized outcome measures and long-term evaluations are essential to determine the sustained impact and implementation potential of these interventions. Furthermore, incorporating structured peer support, tailoring content to medical complexity, and integrating interprofessional teams are recommended in future research. This may have important implications for clinical practice.