Transfer and transition practices in 96 European adult congenital heart disease centres.

Thomet, Corina; Schwerzmann, Markus; Budts, Werner; De Backer, Julie; Chessa, Massimo; Diller, Gerhard; Eicken, Andreas; Gabriel, Harald; Gallego, Pastora; Giamberti, Alessandro; Roos-Hesselink, Jolien; Swan, Lorna; Webb, Gary; Moons, Philip (2021). Transfer and transition practices in 96 European adult congenital heart disease centres. International journal of cardiology, 328, pp. 89-95. Elsevier 10.1016/j.ijcard.2020.11.031

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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.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Department of Cardiovascular Disorders (DHGE) > Clinic of Cardiology

UniBE Contributor:

Thomet, Corina and Schwerzmann, Markus

Subjects:

600 Technology > 610 Medicine & health

ISSN:

0167-5273

Publisher:

Elsevier

Language:

English

Submitter:

Markus Schwerzmann

Date Deposited:

10 Feb 2022 09:03

Last Modified:

10 Feb 2022 09:03

Publisher DOI:

10.1016/j.ijcard.2020.11.031

PubMed ID:

33276020

Uncontrolled Keywords:

Europe Heart defects, congenital Practice guidelines as topic Quality improvement Transition to adult care

BORIS DOI:

10.48350/164743

URI:

https://boris.unibe.ch/id/eprint/164743

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