A psychoeducational intervention for inherited heart conditions
Research type
Research Study
Full title
Developing a psychoeducational intervention to improve the uptake of cardiac screening and/or predictive genetic testing for inherited cardiac conditions
IRAS ID
209714
Contact name
Teofila Bueser
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Inherited heart conditions (IHCs) are a major cause of sudden death in the young. It is caused when a person inherits a genetic trait that causes thickening of the heart muscle or problems with the electrical impulses of the heart. Relatives of an affected person have a 50% chance of inheriting this genetic trait and this can be determined either through a blood test (predictive genetic test) and/or a set of physical tests such as a heart tracing (electrocardiogram), heart scan (echocardiogram) and an exercise test. Patients often find undergoing these tests stressful and are worried not just for their own health but also worry about the impact the result will have on their family. By conducting an in-depth study of the patient and family experience when tha psychoeducational intervention will be developed which will help clinicians and patients work together better in order to support decision-making, minimise stress and anxiety and improve the patient experience.
The project will consist of focus group discussions or interviews with patients aged 16 years and older who have undergone genetic testing and/or heart tests because they are at risk for IHCs. The outcome of this activity and the information from published studies on this topic will be analysed and combined to develop a comprehensive psychoeducational intervention which may consist of written and verbal education material coupled with psychological support. The results of this research will be the basis of a future study to determine whether the intervention is suitable and acceptable to this group of patients.
REC name
London - Fulham Research Ethics Committee
REC reference
17/LO/0059
Date of REC Opinion
20 Jan 2017
REC opinion
Favourable Opinion