Current practice in feminizing surgery for congenital adrenal hyperplasia; a specialist survey

Abstract

Aim: To present the outcome of an online survey of the current practice in feminizing surgery for congenital adrenal hyperplasia (CAH) among the specialists attending the IVth World Congress of the International Society of Hypospadias and Disorders of the Sex Development (ISHID), 2011.

Material and methods: An online survey covered 13 individual questions regarding the management and surgical techniques for 46XX CAH patients. All delegates attending the conference were invited to complete this anonymous survey. The data was analysed by three of the authors.

Results: A total of 162 delegates had registered for the conference and 60% of them were paediatric surgeons or paediatric urologists. 65 delegates completed the online survey. Early surgery, before the age of two years, is preferred by 78% of the surgeons and most of them would include clitoroplasty, vaginoplasty and labioplasty. The most frequent surgical technique used for the clitoroplasty is the partial excision of the corpora cavernosa and the skin flap or "U flap" vaginoplasty. Routine vaginal dilatations after puberty are advocated by 28% of the delegates. More than 75% report good outcomes.

Conclusions: Within the limitations of the methodology of this survey, this study suggests that there is agreement in many aspects related with the surgical treatment for 46XX CAH. Self reported outcomes are satisfactory for most of the respondents.

Keywords: Congenital adrenal hyperplasia; Feminizing genitoplasty; Specialist survey.