Transitional Care for Pediatric Cardiomyopathy Patients in Japan: A Nationwide Survey of Current Practices and Challenges

BACKGROUND: Pediatric cardiomyopathy is a rare but serious condition requiring lifelong follow-up. As survival improves, transitional care from pediatric to adult services becomes increasingly important. However, the current status of transitional care for pediatric cardiomyopathy patients in Japan remains unclear. METHODS: We conducted a nationwide cross-sectional questionnaire survey targeting institutions whose representative physicians were members of the Japanese Society of Pediatric Cardiology and Cardiac Surgery. The survey addressed transitional care practices, challenges, educational needs, and required system improvements. RESULTS: Of 96 institutions, 66 responded (68.8%). Only 12.1% had operational transitional care programs, and 27.3% reported no patients transitioned in the past 5 years. Over 90% of respondents perceived education and training as insufficient. The most frequently cited characteristics of patients with difficult transitions were multiple anomalies/syndromic conditions (75.8%) and intellectual disability (69.7%). Stratified analyses revealed that lower-volume institutions more frequently reported absence of clinical pathways (24.0% vs 4.9%, p = 0.046) and treatment policy differences (60.0% vs 22.0%, p = 0.003), while higher-volume institutions more frequently identified patient knowledge gaps (68.3% vs 16.0%, p < 0.001). Institutions with adult congenital heart disease clinics more frequently recognized family cooperation issues (p = 0.045) and financial challenges (p = 0.023). CONCLUSIONS: Transitional care for pediatric cardiomyopathy in Japan remains largely underdeveloped, with substantial gaps between current practices and the standards recommended by domestic and international guidelines. Cardiomyopathy-specific transition frameworks addressing disease-specific challenges, enhanced education, and system-level policy changes are urgently needed.