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Transitional care for pediatric cardiomyopathy patients in Japan: A nationwide survey of current practices and
Keiichi Hirono1, Kaori Tsuboi1, Mako Okabe1
1Department of Pediatrics, Faculty of Medicine, University of Toyama, Toyama, Japan.
Insights
Transitional care for pediatric cardiomyopathy in Japan is underdeveloped, with few programs and insufficient education. System improvements and disease-specific frameworks are urgently needed for better patient outcomes.
Area of Science:
- Cardiology
- Pediatric Cardiology
- Healthcare Systems
Background:
- Pediatric cardiomyopathy requires lifelong follow-up, making transitional care crucial as survival rates improve.
- The status of transitional care for pediatric cardiomyopathy patients in Japan is not well-defined.
- Effective transition from pediatric to adult services is vital for long-term patient management.
Purpose of the Study:
- To assess the current state of transitional care for pediatric cardiomyopathy in Japan.
- To identify challenges, educational needs, and system improvements required for effective transitional care.
- To compare transitional care practices across different institution types.
Main Methods:
- Nationwide cross-sectional questionnaire survey of institutions in the Japanese Society of Pediatric Cardiology and Cardiac Surgery.
- Survey focused on transitional care practices, challenges, education, and system needs.
- Data analyzed to identify trends and differences based on institution characteristics.
Main Results:
- Only 12.1% of institutions have operational transitional care programs; 27.3% reported no patient transitions in five years.
- Over 90% of respondents found education and training insufficient.
- Difficult transitions were linked to multiple anomalies, intellectual disability, and patient knowledge gaps, with variations based on institution volume and services.
Conclusions:
- Transitional care for pediatric cardiomyopathy in Japan is significantly underdeveloped compared to guidelines.
- There are substantial gaps in current practices, education, and system support.
- Cardiomyopathy-specific transition frameworks, enhanced education, and policy changes are urgently required.
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.
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