Dilated cardiomyopathy in the young: a patient-scientist informed review of unmet needs

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, 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.