Understanding inequalities in Adult Congenital Heart Disease care
Research type
Research Study
Full title
Understanding inequalities in Adult Congenital Heart Disease (ACHD) care: improving surveillance for all – A Mixed Methods Study
IRAS ID
363102
Contact name
Louise Coats
Contact email
Sponsor organisation
Newcastle University
Duration of Study in the UK
3 years, 0 months, 0 days
Research summary
Adults born with congenital heart disease (ACHD) often need lifelong medical follow-up to monitor and manage complications such as heart rhythm problems, valve issues, and heart failure. However, many patients experience gaps in care, which can lead to poorer health outcomes. These gaps are especially common among people from disadvantaged backgrounds, including those with lower incomes or from ethnic minority groups. This study aims to understand why some adults with ACHD are not receiving regular care and why some end up in emergency departments instead of being managed through planned outpatient clinics. The study will use a combination of large-scale NHS data and interviews to explore these issues. Data will be collected from three major ACHD specialist centres in England to identify patterns in clinic attendance and from national hospital records to explore emergency visits. The characteristics of groups missing from care will be identified. Interviews will be conducted with patients who are representative of these groups to hear their experiences and understand barriers to care. By combining statistical analysis with personal stories, the project will identify key problems in the current system and suggest improvements. The purpose of the study is to develop more inclusive and effective ways of delivering care, ensuring that all those with ACHD receive the support they need.
REC name
London - Surrey Research Ethics Committee
REC reference
26/LO/0029
Date of REC Opinion
18 Feb 2026
REC opinion
Further Information Favourable Opinion