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)

Kód výsledku v 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>

Nalezeny alternativní kódy

RIV/00216208:11130/25:10499540

Výsledek na webu

<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>

Jazyk výsledku

angličtina

Název v původním jazyce

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)

Popis výsledku v původním jazyce

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.

Název v anglickém jazyce

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)

Popis výsledku anglicky

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.

Druh

J_imp - Článek v periodiku v databázi Web of Science

CEP obor

—

OECD FORD obor

30201 - Cardiac and Cardiovascular systems

Projekt

—

Návaznosti

I - Institucionalni podpora na dlouhodoby koncepcni rozvoj vyzkumne organizace

Rok uplatnění

2025

Kód důvěrnosti údajů

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

Název periodika

European Heart Journal. Quality of Care and Clinical Outcomes

ISSN

2058-5225

e-ISSN

2058-1742

Svazek periodika

11

Číslo periodika v rámci svazku

7

Stát vydavatele periodika

GB - Spojené království Velké Británie a Severního Irska

Počet stran výsledku

9

Strana od-do

1155-1163

Kód UT WoS článku

001538315600001

EID výsledku v databázi Scopus

2-s2.0-105020972660