These insights could help healthcare professionals tailor advice for people with CLE to ensure they are protected correctly in the sun and has the potential to reduce sun exposure related flare-ups of their skin and other features such as joint pain, weakness and fatigue. The research findings have been published in the international scientific journal Lupus.

The study was led by medical student Bláithín McGarry at Queen’s University in collaboration with two dermatologists from the Belfast Health and Social Care Trust (Dr Collette McCourt and Dr Donal O’Kane) and Professor Gerry Gormley, a GP and academic from the School of Medicine, Dentistry and Biomedical Sciences at Queen’s University.

First author on the research, Bláithín McGarry, said: “CLE can have a profound impact on quality of life. Despite the benefits for disease control, many individuals living with CLE do not practice optimal photoprotection which can cause flare ups which are extremely painful and debilitating.

“In our study we were keen to not only gain insights to patient’s experiences but also the influences that shaped their experiences.”

To conduct their study, individuals living with CLE were recruited from the Department of Dermatology at the Belfast Health and Social Care Trust, Northern Ireland. The research team performed in-depth qualitative research interviews with individuals living with CLE about their photosensitivity and challenges they face when taking care in the sun. In addition to interviewing these individuals, a research technique called ‘rich pictures’ was also used. This is where individuals were invited to draw a picture that represented their experiences. Analysis of these personal experiences also provided important and nuanced insights into their lived experiences and photoprotective behaviours.

The study found participant’s illness experiences of CLE were central to their photoprotection adherence. Often participants recounted that CLE was perceived as ‘just a skin condition’ by others (including health professionals) resulting in false assumptions about their condition. Whilst exposure to the sun could exacerbate their skin symptoms, it could also exacerbate systemic symptoms if they have co-existing systemic lupus erythematosus (SLE) which causes inflammation of other organs and connective tissues in the body.

In addition, the researchers discovered that sunlight can have a negative psychological impact on wellbeing including anxiety and depressive related symptoms in participants, causing them to avoid the sun and social interactions during sunnier months, thus impacting their wellbeing.

Professor Gerry Gormley, co-author on the study, said: “On face value, and even to some healthcare professionals, photoprotective measures can be perceived as a simplistic process. This research shows this is not the case, as illustrated by the experiences of the participants in this study.

“Our person-centred research has helped to give those individuals a voice on this important aspect of their condition and well-being. The disruption and extra burden that CLE places on such individual’s lives is important to be aware of in promoting photoprotective practices.”

Margaret Hughes, Chairperson of the Northern Ireland Lupus Group, a local voluntary group that provides support to people living with the condition, said: “We welcome this important research that highlights the lived experience of people with lupus. It is so important that the medical community understands what it is really like to live with lupus and the impact it can have on people’s mental health and social lives.

“We’re grateful to the team for putting patients experiences at the heart of the research and hope it will help healthcare professionals provide the support people living with CLE need to live full lives with less flares.”