Key result
UK survey reveals good cardiomyopathy care overall but highlights gaps in post-diagnosis support and finances.
Why the study?
Cardiomyopathy imposes physical, mental, emotional, social, and financial impacts resulting in high levels of need, motivating an exploration of care experiences and broader impacts among affected individuals and carers in the UK.
Cross-Sectional (n=1,323)
This UK survey of 1,323 individuals highlights important gaps in holistic post-diagnosis support and financial/employment assistance across cardiomyopathy services despite generally positive clinical care experiences.
May warrant attention to post-diagnosis and financial support in cardiomyopathy services; leaves open effectiveness of interventions in prospective studies.
Background The impact of having cardiomyopathy can be not only physical, but also mental, emotional, social and financial, resulting in high levels of need among the people it affects. This study explored people's experiences of diagnosis, care and support alongside the broader impacts of living with or caring for someone with cardiomyopathy in the UK. Methods Questionnaire development was informed by five semi-structured, in-depth interviews, analysis of data from a previous survey, and advisory group engagement. Fieldwork ran between July and September 2024, using online and paper survey methods. Results A total of 1323 responses were received. Respondents reported that while overall experiences of care were generally good, many felt they had not received enough support to come to terms with their diagnosis. Some respondents felt involved in decisions about their care and treatment, and that different health professionals worked well together. However, others described challenges relating to employment and financial wellbeing because of having, or caring for someone with, cardiomyopathy. Conclusions The results showed a number of gaps in care and support provision across cardiomyopathy services. Everyone with cardiomyopathy and their parents/carers should receive clear and adequate information and holistic support at all stages of the care pathway. Equal access to specialist cardiac care and comprehensive care planning is essential to ensure optimal health and wellbeing, as well as the delivery of high quality, person-centred care.
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Hay et al. (2026) conducted a cross-sectional in Cardiomyopathy (n=1,323). Living with or caring for someone with cardiomyopathy was evaluated on Experiences of diagnosis, care, and support alongside broader impacts of living with or caring for someone with cardiomyopathy. Living with or caring for someone with cardiomyopathy in the UK (n=1,323) revealed generally good care experiences, but highlighted gaps in post-diagnosis support and financial wellbeing.
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