Dilated cardiomyopathy in the young: a patient-scientist informed review of unmet needs
Author(s)
Type
Journal Article
Abstract
Dilated Cardiomyopathy (DCM) is a leading cause of heart failure and the most common indication for a heart transplant. Guidelines are regularly based on studies of adults and applied to the young. Children and adolescents diagnosed with DCM face different lifestyle challenges from individuals diagnosed in adulthood that include medical trauma and are influenced by maturity levels and confidence with advocacy to adults.
Using a UK patient-scientist’s perspective (ERJ), we reviewed the age-specific challenges faced by the young with DCM, evaluated current guidelines and evidence, and identified areas requiring further recommendations and research. We highlight the importance of i) the transition clinic from paediatric to adult services, ii) repeated signposting to mental health services, iii) standardised guidance on physical activity, iv) caution surrounding alcohol and smoking, v) the dangers of illegal drugs, and vi) reproductive options and health.
Further research is needed to address the many uncertainties in these areas with respect to young age, particularly for physical activity, and such guidance would be welcomed by the young with DCM who must come to terms with being different and more limited amongst healthy peers.
Using a UK patient-scientist’s perspective (ERJ), we reviewed the age-specific challenges faced by the young with DCM, evaluated current guidelines and evidence, and identified areas requiring further recommendations and research. We highlight the importance of i) the transition clinic from paediatric to adult services, ii) repeated signposting to mental health services, iii) standardised guidance on physical activity, iv) caution surrounding alcohol and smoking, v) the dangers of illegal drugs, and vi) reproductive options and health.
Further research is needed to address the many uncertainties in these areas with respect to young age, particularly for physical activity, and such guidance would be welcomed by the young with DCM who must come to terms with being different and more limited amongst healthy peers.
Date Issued
2025-03-01
Date Acceptance
2025-01-02
Citation
Cardiology in the Young, 2025, 35 (3), pp.450-457
ISSN
1047-9511
Publisher
Cambridge University Press
Start Page
450
End Page
457
Journal / Book Title
Cardiology in the Young
Volume
35
Issue
3
Copyright Statement
© The Author(s), 2025. Published by Cambridge University Press. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
License URL
Publication Status
Published
Rights Embargo Date
10000-01-01
Date Publish Online
2025-02-06