TY - JOUR
T1 - Current management of transition and multidisciplinary care of patients with inherited and rare cardiomyopathies in Europe
T2 - Results of the European Reference Network for rare and low prevalence complex diseases of the heart
AU - Monda, Emanuele
AU - Biagini, Elena
AU - Blom, Nico
AU - Drago, Fabrizio
AU - Krapels, Ingrid
AU - Krebsová, Alice
AU - Koubsky, Karel
AU - Khraiche, Diala
AU - Martins, Elisabete
AU - Merlo, Marco
AU - Michels, Michelle
AU - Mizia-Stec, Katarzyna
AU - Mörner, Stellan
AU - Peña Peña, Maria Luisa
AU - Planinc, Ivo
AU - Robyns, Tomas
AU - Rydberg, Annika
AU - Saenen, Johan
AU - Rodríguez Palomares, Jose Fernando
AU - Rutger, Hassink
AU - Sarquella Brugada, Georgia
AU - Scheirlynck, Esther
AU - Schulze-Bahr, Eric
AU - Tfelt-Hansen, Jacob
AU - Wolf, Cordula M.
AU - Hofman, Nynke
AU - Amin, Ahmad S.
AU - Wilde, Arthur
AU - Charron, Philippe
AU - Limongelli, Giuseppe
N1 - Publisher Copyright:
© 2025 The Author(s). Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For commercial re-use, please contact [email protected] for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site - for further information please contact [email protected].
PY - 2025/11/1
Y1 - 2025/11/1
N2 - 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 network. Methods and results 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. 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 programmes, inconsistent use of standardized protocols, and a shortage of specialists in cardiogenetics emerged as major unmet needs. Conclusion Significant variability exists in the transition and multidisciplinary care of patients with inherited and rare cardiomyopathies. Standardized 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.
AB - 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 network. Methods and results 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. 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 programmes, inconsistent use of standardized protocols, and a shortage of specialists in cardiogenetics emerged as major unmet needs. Conclusion Significant variability exists in the transition and multidisciplinary care of patients with inherited and rare cardiomyopathies. Standardized 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.
KW - Cardiomyopathy
KW - Multidisciplinary care
KW - Transition
UR - https://www.scopus.com/pages/publications/105020972660
U2 - 10.1093/ehjqcco/qcaf055
DO - 10.1093/ehjqcco/qcaf055
M3 - Article
C2 - 40643001
AN - SCOPUS:105020972660
SN - 2058-5225
VL - 11
SP - 1155
EP - 1163
JO - European Heart Journal - Quality of Care and Clinical Outcomes
JF - European Heart Journal - Quality of Care and Clinical Outcomes
IS - 7
ER -