Nationwide Survey on Transitional Care for Patients With Childhood-Onset Cardiomyopathy in Japan

Area of Science:

• Cardiology
• Pediatric Medicine
• Healthcare Transition

Background:

• Transitioning young patients to adult care requires age-appropriate medical services and patient autonomy.
• While transitional care for congenital heart disease (CHD) is well-studied, childhood-onset cardiomyopathy (CM) lacks specific attention.
• Effective transition strategies are crucial for managing chronic conditions into adulthood.

Purpose of the Study:

• To assess the current status of transitional care for childhood-onset cardiomyopathy (CM) in Japan.
• To compare transitional care practices for CM with those for CHD.
• To identify barriers and opportunities for improving CM transition programs.

Main Methods:

• A nationwide questionnaire survey distributed to 151 pediatric cardiology facilities in Japan.
• Data collection focused on transfer rates and availability of transition programs for childhood-onset CM.
• Analysis compared facilities with high vs. low transfer rates for CM and CHD.

Main Results:

• Only 100 (66%) of facilities responded, with many reporting low transfer rates (<5%) for CM patients.
• Facilities that transfer CHD patients had significantly higher CM transfer rates (83.9%).
• 72% of facilities lack CM-specific transition programs, though 92% acknowledge their necessity. Only 19% offer any transition program, mostly CHD-based.

Conclusions:

• This study highlights a significant deficit in transitional care for childhood-onset CM in Japan.
• CM patients experience lower transfer rates and fewer transition programs compared to CHD patients.
• Adapting successful CHD transition models could establish effective care systems for CM patients.