Abstract
BACKGROUND/OBJECTIVES: Individuals with photosensitivity diseases, including porphyria, face significant challenges in managing their condition due to heightened sensitivity to ultraviolet (UV) and visible light. Comprehensive photoprotection strategies are essential and prioritize environmental modifications, behavioral adjustments, protective clothing, and hats. Sunscreens serve as a supplementary measure, particularly for exposed skin areas not otherwise protected. However, the extensive variety of available sunscreen products and limited guidance on their efficacy complicate the selection process. This study evaluates sunscreen use among photosensitive individuals and gathers feedback to inform future service development and research. METHODS: A questionnaire was completed by 32 individuals with porphyria (mostly with porphyrias causing skin photosensitivity) and 50 individuals with non-porphyric photosensitivity conditions, totaling 82 participants. The survey assessed preferences and experiences with sunscreens, focusing on criteria such as protection efficacy, cost, availability, and ease of use. Responses were analyzed to identify trends and challenges in integrating sunscreens into broader photoprotection strategies. RESULTS: Protection efficacy was the primary factor influencing sunscreen choice among photosensitive patients, highlighting its importance alongside other photoprotection measures. The survey revealed considerable variation in sunscreen use. La Roche-Posay was the most favored brand. While 56% of porphyria patients used sunscreens explicitly labelled for visible light protection, only 11% of non-porphyric patients did so. Overall, 40% of participants reported issues with sunscreens, and approximately half expressed dissatisfaction with certain products, emphasizing the need for more effective and user-friendly options. CONCLUSIONS: Sunscreens are a critical adjunct to broader photoprotection strategies for photosensitive patients but are not a standalone solution. Particularly for those with porphyrias, effectiveness was regarded as especially important. The variability in product preferences and the frequent difficulties reported highlight the need for improved guidance and accessibility of sunscreens tailored to diverse photosensitivity needs. Future research should focus on developing clear recommendations and expanding options to ensure effective and personalized photoprotection.