Oculocutaneous Albinism in Northern Madagascar: Clinical Burden, Social Stigma, and Impact of a Community-Based Photoprotection Program

Oculocutaneous albinism (OCA) increases susceptibility to ultraviolet (UV) skin damage, skin cancer risk, and psychosocial burden. Data from Madagascar are lacking. We conducted a six-month pilot study (July–December 2024) in northern Madagascar (DIANA and SAVA regions). Forty-one individuals with OCA were enrolled. Baseline socio-demographic, clinical, and behavioral data were collected through interviews and dermatological examinations. A structured program provided education, culturally adapted materials, and photoprotective resources, with monthly follow-up visits. The cohort included 22 males and 19 females, with a mean age of 18 years (range: 1 month–35 years). Actinic keratoses were present in 61% of participants, and invasive skin cancer in 4.9%. All patients had photophobia and nystagmus. Social discrimination was reported by 65.9%, with 12.2% describing severe abuse. Baseline photoprotection was inadequate: 43.9% reported no protective practices, 7.3% used sunscreen, and 19.5% avoided midday sun. Follow-up was completed by 20/41 patients (48.8%). Among completers, paired analysis showed a decrease in sunburn prevalence from 95.0% to 10.0% (p < 0.0001), an increase in regular sunscreen use from 0.0% to 100.0% (p < 0.0001), use of protective clothing from 35.0% to 80.0% (p = 0.0039), and adoption of behavioral strategies from 15.0% to 50.0% (p = 0.0156). This first study on OCA in northern Madagascar demonstrates a high burden of UV-related dermatoses and stigma. A low-cost community intervention significantly improved photoprotection. Wider implementation could reduce morbidity and enhance quality of life in resource-limited settings.