Patient Preferences for SSM for Arrhythmia in ACHD
Research type
Research Study
Full title
Patient preference for supported self-monitoring (SSM) of arrhythmia in Adult Congenital Heart Disease (ACHD): a discrete choice experiment
IRAS ID
353877
Contact name
Louise Coats
Contact email
Sponsor organisation
Newcastle University
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Adults born with heart conditions (adult congenital heart disease, or ACHD) need lifelong check-ups because they have a higher risk of developing complications. At present, most outpatient care is reactive. Tests are usually arranged only after a person reports symptoms. This approach can miss early warning signs, delay treatment, and may not prevent hospital admissions. It can also lead to differences in care between patients. New approaches are needed to improve health outcomes, make care fairer and reduce disruption to daily life.
Heart rhythm problems (arrhythmias) are the most common complication in ACHD. They are linked to more serious health risks, including a higher chance of death, longer hospital stays, and greater need for intensive care. Around 1 in 10 adults with ACHD already has an arrhythmia, and another 1 in 10 will develop one within five years. However, arrhythmias can be short-lived and unpredictable, which makes them hard to detect during routine clinic visits. To investigate symptoms, patients may be asked to wear heart monitors for days, weeks, or sometimes longer. The choice of device is usually made by clinicians, based mainly on how often symptoms occur, with limited patient input. There is little research on what people with ACHD prefer when it comes to heart rhythm monitoring. Understanding patient preferences is important to support shared decision-making and ensure monitoring methods are acceptable and practical.
Wearable devices such as smartwatches can track heart rhythm continuously or when symptoms occur. They may help detect problems earlier and reduce the need for frequent clinic visits. This study will explore what adults with ACHD prefer in heart rhythm monitoring, using a structured survey that examines how people weigh up different features when choosing between options.
REC name
London - Riverside Research Ethics Committee
REC reference
26/PR/0462
Date of REC Opinion
29 May 2026
REC opinion
Further Information Favourable Opinion