Background/Purpose: Exposure to sunlight has been implicated as a major contributing factor in the pathogenesis of systemic lupus erythematosus (SLE) and juvenile dermatomyositis (JDM). Despite this evidence, assuring adequate sunscreen use in the pediatric rheumatology patient population remains a challenge. Counseling surrounding adequate sun protection is part of routine clinical practice in pediatric clinics in the US based on American Academy of Pediatrics recommendations. However, studies have shown that prevalence of sunscreen use in children and adolescents is suboptimal with reports of adequate use varying between 13-34%. Adherence also varies based on age, gender and ethnicity. Evidence is lacking regarding sun protection habits among pediatric rheumatology patients and potential barriers to its use. This information is crucial to improve counseling practices for this ubiquitous risk factor. This study aims to investigate sun protection practices in patients being followed in pediatric rheumatology clinic and investigate practice differences in youth with photosensitive versus non photosensitive rheumatologic conditions, as well as risk factors for inadequate sun protection.
Methods: We developed a survey assessing sun protection practices and barriers to adequate usage. The survey was comprised of up to 30 questions and was offered to patients 2-21 years old being seen for routine follow up visits in the pediatric rheumatology clinic at the Children’s Hospital at Montefiore in the Bronx, NY. Patients surveyed had a variety of photosensitive and non-photosensitive conditions, including SLE, JDM, cutaneous lupus erythematosus (CLE), Juvenile Idiopathic Arthritis, and scleroderma. The survey was collected electronically via the Einstein-Montefiore REDCap (Research Electronic Data Capture), a secure web-based application for data collection.
Results: We have enrolled 204 patients to date. Of these, 74 (37%) were diagnosed with a photosensitive skin condition including SLE, JDM or CLE. The median age at enrollment was 15 years old (IQR 12, 18) with the majority of female gender (75%). Race and ethnicity were self-reported with 58% of patients identifying as Hispanic ethnicity; for race, 45% identified as Black, 21% white, 35% other (includes patients who declined to answer). Most patients identified as having darker skin: 52 patients (26%) reported type I or II skin phototype (“burn easily”), 69 patients (35%) type III (“burn moderately”) and 79 patients (40%) types IV-VI (“never burn”).
Among the entire group, 36% reported using sunscreen “daily or most days” which was deemed as appropriate use. Most patients (64%) agreed or strongly agreed sun protection is important. A large majority (69%) of our patients reported spending 2 or more hours outdoors daily in the past month.
Factors associated with adequate sunscreen use were having a photosensitive skin condition, recall of counseling on sunscreen use at initial diagnosis and spending >= 2 hours outdoors daily (Table 1).
Conclusion: This study identifies gaps in sun protection use in a large proportion of patients with rheumatologic disease, including those with photosensitive skin diseases.
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