Development and validation of a HRQoL tool for cardiac sarcoidosis
Research type
Research Study
Full title
Health-related quality of life in cardiac sarcoidosis
IRAS ID
256815
Contact name
Juan Carlos Quijano-Campos
Contact email
Sponsor organisation
Joint Research Management Office (JRMO), Barts Health NHS Trust & Queen Mary University of London
Duration of Study in the UK
2 years, 9 months, 30 days
Research summary
What is the aim of this research?
To develop and validate a new tool (CARD-SARC) for measuring health-related quality of life (HRQoL) in cardiac sarcoidosis (CS) patients.What is cardiac sarcoidosis?
Sarcoidosis is a condition caused by the formation of lumps (granulomas) of abnormal tissue in any organ. These granulomas can destroy healthy tissue and affect the normal function of the organ. However, the exact cause of sarcoidosis is not known. Although sarcoidosis is primarily a lung disease, cardiac sarcoidosis occurs when the heart is affected by the accumulation of granulomas. This can prevent the heart from working properly which is associated with serious consequences.
Cardiac sarcoidosis occurs in up to a third of all sarcoidosis patients, but only causes specific symptoms in around 5% of cases. Common symptoms in cardiac sarcoidosis may include chest pain, irregular heartbeats (pounding or fluttering sensation, or a 'skipping of beats'), heart malfunction, dizziness or fainting spells, and in rare cases sudden cardiac death (when the heart suddenly stops beating). There is no cure for cardiac sarcoidosis. However, there are treatment options to control symptoms including higher dose of anti-sarcoidosis medication, specific tablets or directed electrical impulses to reduce or stop irregular heartbeats, implantation of a pacemaker or defibrillator to reduce risk of sudden death, and heart transplant may be considered in very severe cases.Why is this research needed?
Previous studies suggested that people living with cardiac sarcoidosis can experience a greater impact in their quality of life compared to other types of sarcoidosis, but this has not been studied yet.
Measuring quality of life in people with cardiac sarcoidosis is difficult as questionnaires that do exist have been developed for other forms of sarcoidosis or for specific cardiac problems, but not specifically for people living with cardiac sarcoidosis.REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
21/SW/0155
Date of REC Opinion
26 Oct 2021
REC opinion
Favourable Opinion