Clinical profile and management challenges of disorders of sex development in Africa: a systematic review

Abstract

Abstract Objectives To review the published literature regarding disorders of sex development (DSD) in Africa which will highlight clinical characteristics, and challenges of evaluation and treatment of DSD. Content We performed systematic review of articles published on DSD in Africa between January 2001 and December 2020. Summary Eighteen studies involving 1980 patients from nine countries were analyzed. Overall mean age at presentation was 9.3 years (range 1 day–33 years) with 52.5 and 45.1% reared as females and males, respectively, prior to presentation. Following evaluation however, 64% were assigned female sex, 32.1% were assigned male sex, and 21.8% of the cases required sex reassignment. Only 7 (38.9%) of the publications reported medical treatment of DSD, 4 (22.2%) reported on psychosocial management and 5 (27.8%) documented multidisciplinary team management. Barring regional variations, the documented challenges of management include delayed presentation, loss to follow up, financial challenges, and lack of facilities for care of DSD. Comparison of the cases managed in the last decade (2011–2020) with those managed in the earlier decade (2001–2010) showed a trend towards earlier presentation and reduced rate of sex reassignment in the last decade. However, the challenges persisted. Outlook Barring regional differences, a high proportion of DSD in Africa may have delayed presentation with inappropriate sex of rearing, inadequate evaluation and need for sex reassignment. Specific efforts to improve time to diagnosis, patient evaluation, improvement of healthcare funding, and collaboration with more developed countries may improve the care of patients with DSD in Africa.