Survey-based assessment of skin care knowledge and accessibility barriers in lupus

IntroductionCutaneous lupus can manifest with acute, subacute, and chronic eruptions triggered and exacerbated by ultraviolet exposure, making photoprotection an evidence-based aspect of disease management. This study aims to assess skincare and photoprotection knowledge and habits, medical information sources, and accessibility barriers among patients with lupus to identify knowledge gaps and inform educational initiatives.MethodsA cross-sectional 41-question survey was distributed via REDCap to adult participants with self-reported lupus identified through Research Match, the Northwestern Medicine Enterprise Data Warehouse, and lupus community organizations from August 2022 to March 2023. Data analysis was conducted in R version 4.3.1, and descriptive and linear regression model tests were performed.ResultsOf 129 initiated questionnaires, 115 were completed and met eligibility criteria. Only 43% correctly identified UVA protection on sunscreen labels, and 49% reported daily sunscreen use. Most participants reported receiving skincare information from dermatologists (49%) or rheumatologists (40%), with no statistically significant differences in knowledge level between groups (p = 0.38). Participants with Fitzpatrick skin tones III-IV and V-VI had significantly lower photoprotection knowledge scores compared to Fitzpatrick skin tones I-II (p = 0.002 and p = 0.0006, respectively). Participants with lower incomes (≤$75,000) scored lower than those with higher incomes (>$75,000; p = 0.003). One-third (33%) endorsed difficulty affording the management of their lupus and 15% reported that the cost of sunscreen influenced sunscreen use.ConclusionsThese exploratory findings highlight a need for targeted educational efforts to improve lupus management and outcomes, particularly in low-income groups and communities of color. Dermatologists and rheumatologists care for a substantial portion of patients with lupus and share a responsibility to educate and address these gaps.