RT Journal Article
T1 Transfer and transition practices in 96 European adult congenital heart disease centres.
A1 Thomet, Corina
A1 Schwerzmann, Markus
A1 Budts, Werner
A1 De Backer, Julie
A1 Chessa, Massimo
A1 Diller, Gerhard
A1 Eicken, Andreas
A1 Gabriel, Harald
A1 Gallego, Pastora
A1 Giamberti, Alessandro
A1 Roos-Hesselink, Jolien
A1 Swan, Lorna
A1 Webb, Gary
A1 Moons, Philip
K1 Europe
K1 Heart defects, congenital
K1 Practice guidelines as topic
K1 Quality improvement
K1 Transition to adult care
AB 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. 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. 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. 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.
PB Elsevier Ireland Ltd.
YR 2020
FD 2020-12-01
LK http://hdl.handle.net/10668/16732
UL http://hdl.handle.net/10668/16732
LA en
NO Thomet C, Schwerzmann M, Budts W, De Backer J, Chessa M, Diller G, et al. Transfer and transition practices in 96 European adult congenital heart disease centres. Int J Cardiol. 2021 Apr 1;328:89-95.
DS RISalud
RD Apr 10, 2025