Research Appraisals
Evidence-based critical appraisals of the latest medical research, systematically evaluated using Oxford CEBM methodology.
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Journal of medical Internet research
Digital Health Intervention to Promote Lifelong Specialized Care in Adults With Congenital Heart Disease: Theory-Driven Community Co-Designed Study
BACKGROUND: Adults with congenital heart disease frequently experience gaps in lifelong adult congenital heart disease (ACHD) specialty care, leading to preventable complications, hospitalizations, and premature mortality. However, effective, scalable, accessible, and sustainable strategies to reduce these gaps are lacking. Digital health offers potential solutions but requires a rigorous scientific approach in its design to address the needs of the target population. OBJECTIVE: This study aims to describe the development of a theory-based, community co-designed digital health intervention to improve lifelong ACHD care. METHODS: We integrated theory-based behavioral frameworks, semistructured qualitative interviews with patients and clinicians, and a community-engaged approach to develop a digital health intervention for ACHD. The primary behavioral target was completing an ACHD specialist appointment. We conducted Capability, Opportunity, Motivation, and Behavior (COM-B)-guided semistructured interviews with patients with ACHD and clinicians to identify barriers to specialized care amenable to a digital intervention, and patient-centered goals for the digital tool. The community partners helped develop key intervention objectives, create a theory-driven framework, and specify how each intervention component targets specific COM-B barriers. RESULTS: We interviewed 54 participants (n=37 patients with ACHD, and n=17 clinicians) and engaged 21 community partners representing 4 advocacy organizations. Design objectives emphasized addressing patient loneliness, ensuring accessibility and credibility, and enabling scalability while centering patient perspectives. Participants identified 4 priorities: providing credible resources, uplifting patient voices, customizing to patient needs, and centering positivity and joy. The digital tool, named by community partners as Empower My Congenital Heart (EMCH), was designed within the web- and mobile-based, Apple- and Android-compatible, Eureka Digital Research platform (University of California, San Francisco). Key intervention components included educational modules, peer support, appointment planning nudges, and a digital medical passport. The EMCH's theory-driven framework specifies how each intervention component targets specific COM-B barriers to specialized ACHD care. CONCLUSIONS: The theory-driven, community co-designed EMCH digital tool provides a scalable approach to promote lifelong ACHD specialist care. Ongoing process evaluation and a planned randomized controlled trial will assess acceptability, engagement, and effectiveness in reducing care gaps. If proven effective, EMCH has the potential to prevent complications, emergency hospitalizations, and mortality affecting the majority of adults with congenital heart disease.
25 June 2026
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Bridging Pediatric to Adult Care: A Scoping Review on Transitional Care for Individuals with Congenital Heart Disease Using Data Mining Techniques to Identify Key Topics
BACKGROUND: Adolescents and young adults with congenital heart disease (CHD) face significant challenges when transitioning from pediatric to adult care. Despite growing recognition of its importance, transitional care remains inconsistently implemented across healthcare systems, and a summary of published literature in this regard is still missing. This scoping review aims to systematically map the literature on CHD transitional care and identify key topics and trends. METHODS: Following Joanna Briggs Institute guidelines, we conducted a comprehensive search across seven electronic databases using the Population, Concept, and Context framework. A total of 73 studies were included. Data were extracted and analyzed using Latent Dirichlet Allocation to identify core topics, and Multiple Correspondence Analysis was applied to explore thematic relationships and validate topic structure. Lexicometric analysis assessed the linguistic complexity and specificity of the literature. RESULTS: Three major themes emerged: (1) Education, Self-Management, and Structured Support, (2) Timing, Knowledge Transfer, and Developmental Needs, and (3) Transition Program Implementation and Coordination. These themes reflect an increasing focus on structured educational strategies, developmentally tailored care, and system-level program delivery. Education-focused interventions were more frequently found in recent, high-quality experimental studies. In contrast, studies addressing timing and developmental needs and those focused on implementation were more common in earlier-phase or heterogeneous research contexts. CONCLUSION: Transitional care for individuals with CHD requires more standardized, evidence-based approaches. Improved documentation when reporting transitional care is essential to enhance fidelity, scalability, and long-term impact. This review provides a foundation for developing outcome-focused research and supports designing individualized, high-quality transition programs.
23 May 2026
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