As death rates decrease, people affected by cardiovascular disease (CVD) continue to live with these diseases and the associated challenges, long-term. We aimed to identify the biggest challenges for people affected by CVD in the UK and explore the sources of support and information used to help manage conditions, to inform future service provision. An online questionnaire was sent and advertised to people over 16 years old in the UK self-identifying as affected by CVD (living with CVD, had risk factors, or a carer). There were 13,885 responses. The top five challenges were: feeling down, sad, or depressed; making changes to the way or amount of exercise; anxiety, fear, and uncertainty about the future; having one member of staff to speak to about all aspects of care; and being given information on the side effects of medications. Key challenges were not restricted to a particular condition, indicated by minimal variation between types of CVD. One-quarter of respondents indicated they do not use online resources or digital technologies to help manage their health. The volume and inconsistency of online sources were reported as barriers to using these. The results highlight the psychological and physical consequences of living with CVD. Fragmented care and variable access to information and support further compound these issues. Providing holistic care needs attention; the acknowledgement of psychological needs and access to support, alongside physical challenges is necessary. Stakeholders in healthcare and information technology should work together to ensure online information and support is clear, consistent, and reliable.

Experience Framework

This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework)