Cardiomyopathy: Experiences of Diagnosis
Research type
Research Study
Full title
Cardiomyopathy: Exploring Patients' and Clinicians' Experiences of Diagnosis
IRAS ID
215198
Contact name
Jennifer Rees
Contact email
Sponsor organisation
Liverpool John Moores University
Duration of Study in the UK
1 years, 8 months, 28 days
Research summary
Title: Cardiomyopathy: Exploring Clinicians’ and Patients’ Experiences of Diagnosis
Purpose:
Cardiomyopathies are a range of disorders characterised by structural and functional abnormalities of the heart muscle. As a major cause of morbidity and mortality, cardiomyopathies represent a significant global burden and are the leading cause of sudden death in people under the age of 35. The diagnosis process requires further exploration as, at present, the diagnostic pathway is unclear and can often vary between patients. Similarly, little is known about the lived experiences of newly diagnosed cardiomyopathy patients, or their adjustment to life following diagnosis. This study will provide new insight into the cardiomyopathy diagnostic process through a combination of perspectives.Participants:
Adult NHS patients with a recent diagnosis of cardiomyopathy will be recruited alongside clinicians caring for cardiomyopathy patients.
Methodology:
The study will use a sequential explanatory design with multiple phases (Creswell and Clark 2007). Phase 1 will explore clinicians’ experiences of the diagnostic process using semi-structured interviews. Phase 2 will use a series of validated questionnaires to assess the patients’ quality of life (Green et al. 2000) and psychological wellbeing (Zigmond and Snaith 1983) during the early stages of diagnosis. Using semi-structured interviews, phase 3 will explore the same patients’ experiences of diagnosis, and the implications of living with cardiomyopathy. Follow-up interviews will be conducted 6 months later during Phase 4, to explore the longitudinal impact of the diagnosis.Implications:
This study is expected to highlight the needs of newly diagnosed cardiomyopathy patients and that of their clinicians, with a view to improving services.REC name
HSC REC B
REC reference
17/NI/0099
Date of REC Opinion
7 Jun 2017
REC opinion
Further Information Favourable Opinion