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Published on: July 18, 2014
Transfer and transition practices in 96 European adult congenital heart disease centres
Corina Thomet1, Markus Schwerzmann2, Werner Budts3
1Center of Congenital Heart Disease, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland; Department of Public Health and Primary Care, KU Leuven, University of Leuven, Leuven, Belgium.
Insights
Formal transition programs for adults with congenital heart disease (CHD) are lacking in Europe, despite structured transfer being common. Most programs need improvement in age- and development-based care for lifelong CHD management.
Area of Science:
- Cardiology
- Pediatric Cardiology
- Adult Congenital Heart Disease (ACHD)
Background:
- Congenital heart disease (CHD) requires lifelong management, posing risks for patients even after childhood treatment.
- Formal transition programs are crucial for seamless, age-appropriate care transfer from pediatric to adult settings.
- European guidelines emphasize structured transition and transfer protocols for young persons with CHD.
Purpose of the Study:
- To assess the current state of transfer and transition programs for CHD patients in European Adult Congenital Heart Disease (ACHD) centers.
- To evaluate the progress in transitional care for CHD over the past decade.
Main Methods:
- A descriptive, cross-sectional survey was conducted across 96 European ACHD centers.
- A specialized survey form captured data on transfer and transition practices.
- A transfer-transition index quantified adherence to quality indicators for successful patient transfer.
Main Results:
- Only 41.7% of centers offered formal transition programs; 88.5% had structured transfer processes.
- A 'good' performance on the transfer-transition index was achieved by 31% of centers, with only 4.2% meeting all criteria.
- Most transition programs utilized dedicated specialists (often nurses), but few offered flexible, early-stage transition planning.
Conclusions:
- Nearly half of European ACHD centers provide formal transition programs, with most offering structured transfer.
- Despite improvements, a significant gap remains in implementing age- and development-based approaches in CHD transition care.
- Further development of comprehensive and individualized transition strategies is needed for optimal lifelong CHD management.
Background:
Irrespective of initial treatment for congenital heart disease (CHD) in childhood, CHD is a lifelong condition, leaving patients at risk for complications. To support uninterrupted, age- and development-based care for young persons with CHD, guidelines and consensus papers emphasise the need for formal transition programmes, including transfer to adult CHD (ACHD) clinics. Here, we surveyed existing transfer and transition programmes in European ACHD centres. Our aims were to provide a contemporary view of transitional care for patients with CHD and to evaluate progress over the last decade.
Methods:
We conducted a descriptive, cross-sectional survey in 96 ACHD centres in Europe. A specific survey form was developed that sampled the practices of transfer and/or transition. We used a transfer-transition index to quantify adherence to quality indicators of successful transfer and transition.
Results:
Of the 96 ACHD centres, 40 (41.7%) offered a formal transition, and 85 (88.5%) had structured transfer from paediatric to ACHD care. Although 31% of the centres performed at a 'good' level on the transfer-transition index, only 4 (4.2%) satisfied all criteria. Most centres with a transition programme offered education and support through a dedicated transition specialist, who was a master's-prepared nurse in most centres. A minority of the ACHD centres offered a flexible transition process, starting at least two years before transfer.
Conclusions:
Nearly half of the included ACHD centres offered a formal transition programme, and almost 90% offered structured transfer. Despite some improvements since 2009, most of the programmes lacked an age- and development-based approach.
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