Evaluation of benefit to educational material for photoprotection in those with cutaneous lupus erythematosus

Background: Photosensitivity (PS) in cutaneous lupus erythematosus (CLE) contributes to decreased quality of life (QoL). Aims: We aimed to assess baseline knowledge about sun protection in persons with CLE and identify knowledge differences by race. Additionally, we aimed to determine the impact of a verbal educational intervention on photoprotection and CLE. Methods: 31 adults with CLE were recruited from an academic-based dermatology clinic and completed a 17-item questionnaire about CLE and sun protection at three time points: pre-intervention (PR-I), post-intervention (PO-I), and 3-month phone follow up (3MF). An educational intervention using American Academy of Dermatology CLE and sun protection education materials was delivered between PR-I and PO-I. Results: 31 subjects participated at PR-I and PO-I, and 25 subjects (81%) at 3MF. Baseline CLE-related PS and photoprotection knowledge differed significantly by race, with non-Caucasians demonstrating less knowledge (P= 0.049). Knowledge about sun exposure being linked to lupus increased from 81% to 97% (P=0.25) between PR-I and PO-I. At PR-I, 19% agreed that smoking was linked to lupus compared to 90% PO-I (P<0.001). There was increased knowledge of lupus risk for non-Caucasians, UV exposure indoors, and photo-avoidance during peak daytime (P<0.001). Conclusion: There is a baseline disparity in knowledge related to PS and photo protection in CLE by race. A short educational intervention successfully improved immediate lupus-related PS and sun exposure knowledge, but knowledge was not retained long-term. It appears educational materials must be improved.