{
  "abstract": "Introduction A study was conducted to explore experiences of diagnosis, care, support and impacts of living with cardiomyopathy in the UK to identify areas for improvement in care delivery.Methods A questionnaire was developed to gain insight into the experiences of the UK population affected by cardiomyopathy. Survey content was informed by qualitative research with five participants who either had or cared for someone with cardiomyopathy, alongside input from an advisory group of expert stakeholders and reference to existing, validated patient experience survey questions. The questionnaire was tested with eight people who had or cared for someone with cardiomyopathy. The survey ran from July to September 2024 using online and paper survey methods and used existing networks and social media to publicise the study. It was open to anyone in the UK over the age of 16 who had or cared for someone with cardiomyopathy.Results 1323 people completed the survey. Of those, 91% were a person living with cardiomyopathy, 6% were a carer to an adult with cardiomyopathy and 2% were a parent or carer to a child with cardiomyopathy. More than four fifths of respondents (82%) were over the age of 50. Under half (47%) were from the South of England and London, 7% were from Scotland, 6% Wales and 2% Northern Ireland.Key findings:Upon diagnosis, 27% either did not receive any information about their condition at all, or they did not receive information about their condition in a way they could understand50% of people diagnosed with cardiomyopathy had not received enough support to come to terms with their diagnosis76% did not have a comprehensive care plan that detailed their care and support39% of respondents wanted or needed physical activity support but did not receive this40% said that the cardiology team had not discussed their mental health and wellbeing but they had wanted or needed this61% of respondents said that they or the person they cared for were offered genetic testingConclusion There are some pockets of great care in UK cardiomyopathy healthcare provision. But many respondents reported room for improvement in support for their care across the NHS, with a general lack of follow-up care. Many respondents did not have a clear plan for their care or treatment.",
  "authors": [
    {
      "affiliations": [
        "Cardiomyopathy UK"
      ],
      "name": "Katharine McIntosh"
    },
    {
      "affiliations": [
        "Cardiomyopathy UK"
      ],
      "name": "Katie Le Blond"
    },
    {
      "affiliations": [
        "Picker Institute"
      ],
      "name": "Harriet Hay"
    },
    {
      "affiliations": [
        "Picker Institute"
      ],
      "name": "Georgia Dimiccoli"
    },
    {
      "affiliations": [
        "Picker Institute"
      ],
      "name": "Amy Tallett"
    }
  ],
  "title": "1-032 Findings from a national patient experience survey of people affected by cardiomyopathy in the UK",
  "uid": "a4d04afe-4aba-53ab-9d02-624ab479e3c5"
}