Abstract:
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.
journal_name
Int J Cardioljournal_title
International journal of cardiologyauthors
Thomet C,Schwerzmann M,Budts W,De Backer J,Chessa M,Diller G,Eicken A,Gabriel H,Gallego P,Giamberti A,Roos-Hesselink J,Swan L,Webb G,Moons P,ESC Working Group on Grown-up Congenital Heart Disease.doi
10.1016/j.ijcard.2020.11.031subject
Has Abstractpub_date
2020-12-01 00:00:00eissn
0167-5273issn
1874-1754pii
S0167-5273(20)34154-1pub_type
杂志文章abstract:BACKGROUND:Limited data exist about the clinical presentation and outcomes of patients with inferior vena cava agenesis (IVCA) who develop deep vein thrombosis (DVT). METHODS:We used the RIETE (Registro Informatizado Enfermedad Trombo Embólica) registry to compare clinical characteristics and outcomes of patients with...
journal_title:International journal of cardiology
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journal_title:International journal of cardiology
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journal_title:International journal of cardiology
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journal_title:International journal of cardiology
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journal_title:International journal of cardiology
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journal_title:International journal of cardiology
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journal_title:International journal of cardiology
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pub_type: 杂志文章
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journal_title:International journal of cardiology
pub_type: 杂志文章,随机对照试验
doi:10.1016/j.ijcard.2010.10.049
更新日期:2012-03-22 00:00:00
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journal_title:International journal of cardiology
pub_type: 杂志文章
doi:10.1016/j.ijcard.2008.04.019
更新日期:2009-07-24 00:00:00
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journal_title:International journal of cardiology
pub_type: 杂志文章,评审
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pub_type: 杂志文章,多中心研究
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更新日期:2013-10-09 00:00:00
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journal_title:International journal of cardiology
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