Heart failure & cardiomyopathies
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
Authors' 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.
Study context
- Population
- Specialised European centres within the European Reference Network for rare and low prevalence complex diseases of the heart managing inherited and rare cardiomyopathies; one cardiologist with expertise in inherited and rare cardiomyopathies per centrecentres across 12 European countries
- Participants
- 26 participants
- Outcome
- Transition plan
Methodological details21-question survey, descriptive statistics
- 21-question survey
- Descriptive statistics
Main finding
As reported in the abstract
Centres reporting having a transition plan
81%
Centres implementing it for all patients
42%
Centres with no formal protocol
19%
Observational data: associations, not effects.
Further findings
Multidisciplinary care
- Multidisciplinary care well integrated, with regular team discussions, though key professionals such as psychologists and nurses were often absent
Unmet needs
- Lack of structured transition programmes, inconsistent use of standardized protocols, and a shortage of specialists in cardiogenetics emerged as major unmet needs
Original publication
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. Eur Heart J Qual Care Clin Outcomes. Published 11 July 2025. doi:10.
Summarised from the published abstract; every number is checked against it