Hypertrophic Cardiomyopathy - Caseload Profile & Exercise Perceptions
Research type
Research Study
Full title
Local Nurse-Led Hypertrophic Cardiomyopathy Clinics: Profiling the Caseload and Exploring Patients’ Exercise Perceptions
IRAS ID
259331
Contact name
Aynsley Cowie
Contact email
Sponsor organisation
NHS Ayrshire and Arran
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
Cardiomyopathies are diseases affecting the heart muscle. Hypertrophic cardiomyopathy is the most common inherited cardiomyopathy. \n\nThe main aim of this study is to obtain the details and clinical picture of a new nurse-led hypertrophic cardiomyopathy (HCM) clinic within NHS Ayrshire and Arran, and better understand clinic attendees’ perceptions of physical activity, exercise and sport in HCM.\t\n\nCase notes of all of those referred to the clinic within NHS Ayrshire and Arran in its first year (April 2018-March 2019) will be examined. The clinic caseload includes both those with established HCM, and family members deemed at risk of developing HCM. The case note information will be summarised in terms of the overall ‘picture’ of those attending the clinic, and will be examined for trends and particular sub-groups.\n\nClinic attendees will be invited to participate in focus (’discussion’)groups. Every focus group will consist of 6-12 participants and will be based around the question: “What are your thoughts on physical activity, exercise and sport for people with HCM?” To allow similar and different perceptions to be examined between the two types of clinic attendee, separate groups will be arranged for those who have established HCM, and for family members at risk of developing HCM. \n\nAt least two of each type of focus group will be held. After every group, themes within the discussion data will be identified. Groups will continue to be arranged until no new themes emerge.\n\nThe combination of caseload information and focus group discussion data from this study will help inform the development of the nurse-led HCM clinic within Ayrshire, and across four other new clinics in Scotland. It is hoped that a package of education for use at clinic will be derived from the findings of this study, and piloting the ’package’ will formulate a second ‘phase’ to the work.\n\n\n
REC name
West of Scotland REC 5
REC reference
19/WS/0127
Date of REC Opinion
27 Aug 2019
REC opinion
Favourable Opinion