Current Management of Transition and Multidisciplinary Care of Patients with Inherited and Rare Cardiomyopathies in Europe: Results of the European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart (ERN GUARD-HEART)
Status Publisher Language English Country England, Great Britain Media print-electronic
Document type Journal Article
PubMed
40643001
DOI
10.1093/ehjqcco/qcaf055
PII: 8196530
Knihovny.cz E-resources
- Keywords
- cardiomyopathy, multidisciplinary care, transition,
- Publication type
- Journal Article MeSH
BACKGROUND AND AIMS: Cardiomyopathies are a heterogeneous group of genetic disorders requiring specialised, multidisciplinary management to optimize patient outcomes. A critical aspect of care is the transition of paediatric patients to adult services, which varies significantly across healthcare systems.This study assessed current practices in care transition and multidisciplinary management of inherited and rare cardiomyopathies across specialised European centres within the European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart (ERN GUARD-Heart) network. METHODS: A 21-question survey was distributed to healthcare providers within the network. A single participant (i.e., cardiologist with expertise in the diagnosis and management of inherited and rare cardiomyopathies) from each centre was approached. Responses from 26 centres across 12 European countries were analysed using descriptive statistics to evaluate institutional characteristics, transition protocols, and multidisciplinary team involvement. RESULTS: While 81% of centres reported having a transition plan, only 42% implemented it for all patients, and 19% had no formal protocol. Multidisciplinary care was well-integrated, with regular team discussions, though key professionals such as psychologists and nurses were often absent. The lack of structured transition programs, inconsistent use of standardised protocols, and a shortage of specialists in cardiogenetics emerged as major unmet needs. CONCLUSIONS: Significant variability exists in the transition and multidisciplinary care of patients with inherited and rare cardiomyopathies. Standardised transition protocols, greater involvement of multiple healthcare professionals, and enhanced training in cardiogenetics are needed to ensure continuity of care and improve patient care across Europe.
Antwerp University Hospital Antwerp Belgium
Cardiology Unit IRCSS Azienda Ospedaliero Universitaria di Bologna Bologna Italy
Centro de Investigación Biomédica en Red de Enfermedades Cardiovasculares Madrid Spain
Copenhagen University Hospital Rigshospitalet Copenhagen Denmark
Department of Cardiology Institute for Clinical and Experimental Medicine Prague Czech Republic
Department of Cardiology University Medical Centre Utrecht Utrecht The Netherlands
Department of Cardiovascular Sciences KU Leuven Leuven Belgium
Department of Clinical Genetics Maastricht University Medical Center the Netherlands
Department of Clinical Sciences Pediatrics Umeå University Umeå Sweden
Department of Medicine Faculty of Medicine University of Porto Porto Portugal
Institute for Genetics of Heart Diseases University Hospital Münster Münster Germany
Member of the European Reference Network for rare low prevalence or complex diseases of the Heart
Pediatric and Congenital Cardiology Unit Hôpital Necker Enfants Malades M3C Necker Paris France
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