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Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
Transition from Paediatric to Adult Care in Congenital Heart Disease: A Call for Action
Fabiola Boccuto1, Rosaria Barracano2, Giulia Guglielmi3
1Division of Cardiology, University Hospital Renato Dulbecco, 88100 Catanzaro, Italy.
Insights
Transitioning congenital heart disease (CHD) patients to adult care requires structured programs. Standardized, multidisciplinary protocols are essential for lifelong health and improved outcomes in adults with CHD.
Area of Science:
- Cardiology
- Pediatric Medicine
- Public Health
Background:
- Congenital heart disease (CHD) care transition from pediatric to adult services is critical for long-term outcomes.
- Growing adult CHD population requires lifelong, multidisciplinary care, yet continuity is often lacking.
- Current transition programs are inconsistent, highlighting the need for standardized protocols.
Purpose of the Study:
- To advocate for structured, standardized transition programs in congenital heart disease (CHD) care.
- To identify essential components for optimizing outcomes during CHD care transition.
- To emphasize the lifelong nature of CHD management and the need for integrated care.
Main Methods:
- This review synthesizes current knowledge on CHD transition care.
- It emphasizes a multidisciplinary, longitudinal approach integrating medical, educational, and psychosocial aspects.
- Key domains for transition programs are identified based on existing evidence.
Main Results:
- Structured transition programs improve patient health literacy, adherence, and self-management.
- These programs reduce patient loss to follow-up and enhance overall care continuity.
- Multidisciplinary involvement, including primary care, is crucial for holistic care.
Conclusions:
- Transition in CHD care must be viewed as an essential, lifelong process.
- Standardized, evidence-based transition protocols are urgently needed for adults with CHD.
- Implementing such protocols will empower patients and optimize long-term clinical and psychosocial well-being.
Abstract:
Background: Transition from paediatric to adult care in congenital heart disease (CHD) represents a pivotal and vulnerable phase that critically influences long-term survival, morbidity, and quality of life. Advances in paediatric cardiology and surgery have generated a rapidly growing population of adults with congenital heart disease who exhibit complex, lifelong, and multidisciplinary needs. However, survival does not equate to cure, and discontinuity of care during adolescence remains a major predictor of adverse outcomes. Despite widespread recognition of their importance, transition programmes are heterogeneous worldwide, and standardised, evidence-based protocols are missing. Objective: This review calls for action acknowledging the urgent need for structured and standardised transition programmes in CHD care, integrating the key elements that should be addressed in any programme to optimise outcomes. Content: Transition should be understood as a multidisciplinary, longitudinal process integrating medical management, patient and family education, psychological preparation, and societal inclusion. Core domains include tailored physical activity, nutritional counselling, cardiovascular risk factor management, infective endocarditis prevention, reproductive health, psychosocial support, and engagement of primary care providers, educators, and employers. Evidence demonstrates that structured transition programmes enhance health literacy, adherence, and self-management, while reducing loss to follow-up. The active involvement of primary care providers, psychologists, educators, and employers is essential to sustain holistic and equitable care. Conclusions: Transition should be reframed as an essential, lifelong component of CHD care. The development and implementation of standardised, multidisciplinary, evidence-based transition protocols are urgently required to ensure continuity, empower patients, and optimise long-term clinical and psychosocial outcomes for adults with CHD.
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