TY - JOUR
T1 - Transfer and transition practices in 96 European adult congenital heart disease centres
AU - ESC Working Group on Grown-up Congenital Heart Disease
AU - Thomet, Corina
AU - Schwerzmann, Markus
AU - Budts, Werner
AU - De Backer, Julie
AU - Chessa, Massimo
AU - Diller, Gerhard
AU - Eicken, Andreas
AU - Gabriel, Harald
AU - Gallego, Pastora
AU - Giamberti, Alessandro
AU - Roos-Hesselink, Jolien
AU - Swan, Lorna
AU - Webb, Gary
AU - Moons, Philip
N1 - Copyright © 2020 Elsevier B.V. All rights reserved.
PY - 2020/12/1
Y1 - 2020/12/1
N2 - 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.
AB - 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.
U2 - 10.1016/j.ijcard.2020.11.031
DO - 10.1016/j.ijcard.2020.11.031
M3 - Article
C2 - 33276020
JO - International Journal of Cardiology
JF - International Journal of Cardiology
SN - 0167-5273
ER -