Validating the CVID_QoL questionnaire in a UK population
Research type
Research Study
Full title
Validating the CVID_QoL questionnaire in a UK population
IRAS ID
250231
Contact name
Mari Campbell
Contact email
Sponsor organisation
Royal Free London NHS Foundation Trust
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Understanding the impact of a physical health condition on quality of life is important for ensuring patient-centred care and to inform policy development and decision making. Common Variable Immunodeficiency (CVID) is a group of rare disorders of the immune system (affecting 1·3/100 000 people in the UK) that reduce the function of the immune system and result in severe infections (Edgar et al., 2014). There are currently no quality of life measures developed specifically for patients with Immunodeficiency that have been validated in a UK population. A measure (the CVID_QoL questionnaire) has been developed by Italian Immunologists working with patients with this condition and this project aims to ensure that it is relevant, reliable and valid for patients in the UK.
Patients over the age of 16, diagnosed with CVID, and currently prescribed Immunoglobulin replacement therapy or prophylactic antibiotics, will be invited to participate in the project. A focus group will be run with eight patients or members of patient charities to ensure that the questions are relevant to British patients. Following from this, all patients attending clinic appointments will be asked to complete a questionnaires pack and information will be gathered from medical notes. The results on the questionnaires and information gathered will be compared to confirm the validity of the measure.
The results of this study will be fed back to clinicians, patients and families through conferences and patient meetings, publication in medical journals and patient newsletters. The validated questionnaire can be used for future research studies in CVID in the UK.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
19/EM/0018
Date of REC Opinion
15 Jan 2019
REC opinion
Further Information Favourable Opinion