Understanding barriers to effective photoprotection in lupus
Research type
Research Study
Full title
What is the lived experience of individuals with cutaneous lupus erythematosus (CLE) and taking care in the sun?
IRAS ID
272403
Contact name
Gerry Gormley
Contact email
Sponsor organisation
Queens University Belfast
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 5 months, 0 days
Research summary
Research Summary
Cutaneous lupus erythematosus (CLE) is a skin condition affecting 4 per 100,000 of the population. CLE can occur independently or in association with systemic lupus erythematosus (SLE). CLE affects the skin only, producing a rash. SLE can also affect the skin and also affects other organs including the brain, kidneys and joints. The rash that CLE produces, as well as the symptoms experienced by SLE patients, can be made worse on exposure to ultraviolet radiation (UVR) via sunlight. CLE patients are therefore encouraged to take care in the sun to prevent this, although research has found that many do not do so. Patients therefore often require treatment with toxic medications to control their UVR induced symptoms. Despite the knowledge that many CLE patients do not adequately take care in the sun, no research has been done to find out why this is the case and so we have decided to research this area. We will recruit 6-10 adults with CLE, and carry out interviews within the Dept of Dermatology, Belfast Health and Social Care Trust (BHSCT). In the interview, participants will be asked to draw a picture representing their experience of taking care in the sun. They will be asked to explain this, and will be asked about their awareness of the importance of taking care in the sun, as well as any factors which make taking care in the sun more or less difficult. By carrying out these interviews, we hope to gain an insight into the experience of taking care in the sun as a CLE patient, allowing us to improve care in the sun in CLE patients, avoiding the need for toxic medications. This will benefit the participants of the study and many others. The study will last from November 2019 – May 2020.
Summary of Results
The results of this study provide deep insights into the challenges faced by individuals living with Cutaneous Lupus Erythematosus (CLE) when managing sun exposure. Although often considered a 'simple' process, it is, in fact, a significant struggle for those with CLE to protect themselves from the sun. Furthermore, the challenges of sun care extend beyond merely applying sunscreen. These challenges can impact their overall well-being and social interactions.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
20/EM/0019
Date of REC Opinion
23 Jan 2020
REC opinion
Further Information Favourable Opinion