ESPE Yearbook of Paediatric Endocrinology

J Pediatr Urol. 2019 May;15(3):244-250. DOI: 10.1016/j.jpurol.2019.02.021

• This retrospective review of the surgical and psychosocial outcomes included 25 patients who underwent feminizing genital reconstructive surgery in Nigeria.

• Barriers to optimal care delivery for disorders of sexual development (DSDs) in LMICs include late presentations, inadequate diagnostic and treatment facilities, a social desirability of male sex, stigmatization, and high frequency of late sex reassignment.

Care for DSDs that results in optimal bio-psycho-social health outcomes is difficult to achieve anywhere but presents even greater challenges in LMICs. In settings where lay and health professional awareness of DSDs is low, diagnosis is often delayed, and sex of rearing decided upon regardless of the underlying chromosomal, gonadal and phenotypic sex, sexual function, or prospects of fertility. Rather, religious beliefs, cultural norms and societal pressures may predominate the decision-making process. Further, in the absence of sophisticated diagnostic tools providers need to rely on clinical exam, pelvic ultrasound, and minimal hormonal (17-hydroxyprogesterone) and genetic (Barr body detection) evaluation to make a diagnosis and decide on a care plan.

Diagnoses made as late as during teenage years to young adulthood led to gender reassignment in a striking 10 of 25 patients evaluated here (including 8 of 21 with likely 46 XX DSD due to CAH). However, multi-disciplinary care teams are beginning to emerge, and they are reviewing their practice, using small, but feasible and meaningful research studies to improve the quality of their care and health outcomes for their patients. They conclude that timely evaluation, more adequate diagnostic tools, reliable access to hormone treatments, improvements in timing of surgery and operating technique, as well as gender equality and stigma reduction can help to reduce barriers and improve care outcomes.