PO:14:196 | Photosensitivity in Lupus Erythematosus: The Patients' Perspective in a National Survey

Marianna Salis¹, Elisabetta Chessa², Alessandra Oliva¹, Marta Paola Pireddu¹, Fabio Congiu¹, Giulia Rizzo¹, Elena Ragusa¹, Alberto Cauli^1|2, Laurent Arnaud³, Matteo Piga^1|2 | ¹Università degli Studi di Cagliari, Italy; ²Azienda Ospedaliera Universitaria di Cagliari, Unità Operativa Complessa di Reumatologia Cagliari, Italy; ³Strasbourg University and Academic Hospitals Strasbourg, France

Objective. Photosensitivity (PS) represents a common, though nonspecific, clinical manifestation in patients with Lupus Erythematosus (LE). It has been defined as a “skin rash as a result of unusual reaction to sunlight, by patient history or physician observation” (Tan et al., 1982). The aim of this study was to describe the characteristics and consequences of PS in LE patients. A secondary objective was to assess the level of knowledge among patients regarding PS and photoprotective measures.

Materials and Methods. The study was conducted involving adult patients affected by clinically confirmed Systemic LE (SLE) or Cutaneous LE (CLE). Patients voluntarily completed a 46-question questionnaire, in Italian, administered online, within the framework of the international PHOTOLUP study. Data were analyzed using descriptive statistics.

Results. A total of 170 patients completed the survey, of whom 157 (92.4%) had clinically confirmed SLE and 4 (2.4%) had isolated CLE. The study population was predominantly female (161, 94.7%) with a mean age of 41.1 years (SD±13.9). More than half of the cohort (97, 57.1%) exhibited Fitzpatrick skin phototype III. 116 (68.6%) patients reported having experienced photosensitivity symptoms during their lifetime, described as the onset or exacerbation of systemic symptoms or skin lesions following exposure to sunlight. The most frequent symptoms are reported in figure 1. Within the study population, 6.1% reported not using any form of photoprotective measures. The most commonly adopted photoprotective strategy was the use of sunscreen, as shown in figure 2. Figure 3 summarizes the level of awareness and knowledge of our population. Notably, 19.7% of participants stated they were not aware of the importance of photoprotection in the context of the disease (figure 4). Patients also reported feeling concerned about leaving their home (58, 43.3%) or avoided engaging in outdoor activities (58, 43.3%) due to the possibility that sun exposure might trigger a disease flare-up.

Conclusions. Despite PS being a common feature, patients are sometimes unaware of the potential harmful effects of Ultraviolet exposure and of the importance of adopting appropriate photoprotective strategies. These results suggest the need for implementing educational interventions during clinical consultations, given that photoprotection begins with patient education.