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)

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00064203%3A_____%2F25%3A10499540" target="_blank" >RIV/00064203:_____/25:10499540 - isvavai.cz</a>

Alternative codes found

RIV/00216208:11130/25:10499540

Result on the web

<a href="https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=R7OLFXm4H5" target="_blank" >https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=R7OLFXm4H5</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.1093/ehjqcco/qcaf055" target="_blank" >10.1093/ehjqcco/qcaf055</a>

Result language

angličtina

Original language name

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)

Original language description

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.

Czech name

—

Czech description

—

Type

J_imp - Article in a specialist periodical, which is included in the Web of Science database

CEP classification

—

OECD FORD branch

30201 - Cardiac and Cardiovascular systems

Project

—

Continuities

I - Institucionalni podpora na dlouhodoby koncepcni rozvoj vyzkumne organizace

Publication year

2025

Confidentiality

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Name of the periodical

European Heart Journal. Quality of Care and Clinical Outcomes

ISSN

2058-5225

e-ISSN

2058-1742

Volume of the periodical

11

Issue of the periodical within the volume

7

Country of publishing house

GB - UNITED KINGDOM

Number of pages

9

Pages from-to

1155-1163

UT code for WoS article

001538315600001

EID of the result in the Scopus database

2-s2.0-105020972660