Risk perception and Inherited Cardiac Conditions
Research type
Research Study
Full title
Exploring the perception of risk in children and their families with a diagnosis of an inherited cardiac condition
IRAS ID
314175
Contact name
Bernadette Khodaghalian
Contact email
Sponsor organisation
Alderhey Children's Hospital
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
It is estimated around 340,000 people in the UK live with an Inherited cardiac condition. Most of these conditions are associated with sudden cardiac death. Diagnosis of such a condition does not affect one individual but given their heritable nature, the entire family. Such conditions are a significant source of anxiety and uncertainty specifically in relation to the possibility of a life threatening event and there is very little published on this in the paediatric population. Paediatric patients may not be the first to present in a family but certainly carry a significant burden in terms of ongoing screening and even predictive genetic testing at a time of life that is vital for their long term cognitive development, future aspirations and how they see themselves as mature individual.
Our aim is to undertake a small pilot study into the perception of risk in children and their families with diagnoses of inherited cardiac conditions in our region, inviting children, parents and where appropriate siblings for interview. Our initial focus will be on specific conditions such as children with hypertrophic cardiomyopathy, using semi structured interviews to look at their understanding and estimation of risk and then compare this with the HCM risk calculator we know to be in existence (Norrish et al, 2019). Going forward, we are looking to expand this model to other inherited cardiac conditions in a paediatric population and increase our patient sample by approaching other tertiary paediatric cardiology centres with whom we work closely in order to improve the quality and applicability of the data. Our ultimate aim is to produce work which provides useful insights into the emotional and psychological needs of children and their families with inherited cardia conditions, improving care in both the inpatient and outpatient setting.
REC name
Wales REC 2
REC reference
22/WA/0261
Date of REC Opinion
22 Sep 2022
REC opinion
Unfavourable Opinion