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.

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.