Cross-sectional study on clinical profile and quality of life of individuals with occulocutaneous albinism in Lagos, Nigeria

Introduction: Albinism is a genetic disorder of pigmentation with variable phenotypic presentations. Albinism occurs all over the world, with highest prevalence in sub-Saharan Africa. The most common type is oculocutaneous albinism (OCA), an autosomal recessive disorder. Albinism is associated with morbidity and mortality in Africans. This study aims to describe the epidemiology of OCA, clinical expressions, and effect on the quality of life (QoL). Methods: Individuals with albinism were invited through the albino foundations and dermatology clinic of Lagos University Teaching Hospital. Structured questionnaires were used to document demographic and clinical data: occupational history, sun exposure, sun protective behavior, knowledge of adverse effects of sun exposure, and QoL and features of photodamage. Results: A total of 142 Nigerians with albinism were recruited. The male to female ratio was 1:1.25. The median age was 22.5 and interquartile range 10.25 to 34. Knowledge of need for sun protection was found in 129 (90.8%): 81 (57%) had daily sun exposure and 61 (43%) had work exposure to sun. Use of sun protection was noted in 103 (72.5%). Overall, photodamage was found in 136 subjects (95.8%). Mean effect of albinism and photodamage on QoL was 6.34 ± 4.47 (standard deviation) corresponding to moderate effect on QoL and domain of “symptoms and feelings” was most affected. Conclusion: The prevalence of photodamage among people with albinism is high despite knowledge of sun protection. There is need for efforts on photoprotection by individuals with albinism and public health interventions.