Heart health survey
Research type
Research Study
Full title
Heart health survey of adults with congenital heart conditions following the COVID-19 pandemic; a questionnaire-based study of patient experience and psychological health needs.
IRAS ID
302040
Contact name
Anne-Marie Doyle
Contact email
Sponsor organisation
Royal Brompton Hospital
Duration of Study in the UK
1 years, months, days
Research summary
Congenital heart disease (CHD) is the most common type of heart problem in newborn babies with almost 1 in 10 families affected. Due to medical and surgical advances, many babies and children now survive into adulthood; in the UK there are approximately 135,000 adults with an ongoing need for healthcare across their lifetime.
Treatment includes heart surgery in childhood, re-do heart surgeries in adulthood, annual health reviews, cardiac procedures, medication, and implantable devices such as permanent pacemakers and cardioverter defibrillators. Whilst these treatments are life-saving and life-extending, they can also be psychologically challenging and there is currently little research about the psychological needs of this adult group.
There are a total of 11 specialist ACHD centres in the UK; the current study is led by a clinical research collaboration between the Royal Brompton and Harefield Hospitals and Guy's and St Thomas' Hospitals, forming the largest ACHD centre in the UK and one of the largest in Europe.
The study combines quantitative and qualitative methodology to better understand patients’ current needs. Participants will be invited to complete an online questionnaire, co-produced by ACHD patients and healthcare professionals, using convenience sampling drawn from hospital outpatient clinics and from ACHD patient networks.
New national ACHD service standards were introduced in England in 2016 and the pandemic has given rise to new opportunities for healthcare delivery; this research aims to understand patients’ medical and psychological needs and place them at the heart of ongoing service design and modernisation.
Results will be published in a written report available to healthcare professionals, patients, families and the general public.
REC name
HSC REC A
REC reference
23/NI/0008
Date of REC Opinion
14 Mar 2023
REC opinion
Further Information Favourable Opinion