Prevalence and geographical distribution of persons with albinism (PWA) in Togo in 2024

BACKGROUND: Persons with albinism (PWAs) in Africa represent a vulnerable population facing social discrimination, severe health issues such as skin cancers, and precarious socioeconomic conditions. The objective of this study was to estimate the prevalence of albinism and map the distribution of persons with albinism in Togo in 2024. METHOD: This cross-sectional descriptive study was conducted from November 2023 to October 2024 across all 39 health districts in Togo, and it included a telephone survey in which community health workers (CHWs) identified PWAs in their districts. CHWs were subsequently trained to perform onsite data collection using the Kobocollect application. Finally, the data were reviewed by national association representatives of PWAs to validate the data and address any gaps. The data were analysed using R software, while geographic mapping was performed with QGIS. RESULTS: A total of 1,521 PWAs were identified in Togo, which is a prevalence of 18.7 PWAs per 100,000 inhabitants (equivalent to 1/5,323; 95% CI [1/5,605; 1/5,065]). Sociodemographic and regional characteristics were available for 1,433 PWAs who consented to participate in this study and were included in the PWA database in Togo. Districts such as Kpélé, Danyi, and Amou presented the highest density of PWAs. The PWA population is predominantly young, with 62.7% under 25 years of age, and it has a slight female predominance (52.2%). Approximately 70.7% of PWAs reported daily exposure to the sun without adequate protection. Moreover, 61.6% had no regular income, and only 1.4% earned over 100 000 FCFA per month. Over 30% of PWAs experienced health issues related to albinism, yet only 37% had a medical follow-up record. CONCLUSION: This first national study in Togo allowed us to estimate the prevalence of albinism in the country. The geographic distribution shows that PWAs are present throughout Togo, with concentrations in large cities. This type of research must continue to enable early identification and monitoring of PWAs to reduce the occurrence of serious health problems such as skin cancers.