ESPE Abstracts

Background: Following the intense debates and controversies regarding all forms of genital surgeries on minors, particularly the appropriateness of clitoral surgeries, assessing all outcomes of clitoromegaly management is imperative in directing future management.

Methods: As part of a broader qualitative interview study involving 25 parents of patients with confirmed cases of clitoromegaly due to congenital adrenal hyperplasia, we asked 19 mothers and 6 fathers, the question, “Does your daughter have a larger than usual clitoris?” We also noted the parents’ qualitative reflections on their responses. Each of the girls discussed had undergone one of the three management pathways in relation to clitoromegaly; (i) early childhood clitoral reduction surgery (ii) early childhood clitoral concealment surgery, or (iii) no surgery on or around the clitoris. Our measurement was of parental perception of size-normalcy as one element of clitoromegaly treatment outcome.

Results: We gained responses from 24 parents regarding 26 treated girls with CAH. The age range of the patients was 1-16 years with median age of 13 years old. Sixty-two percent (16) of the participants’ daughters had undergone clitoral surgeries, the larger group being clitoral concealment (63%) with 37 % having undergone clitoral reduction surgery. However, 10 out of the 26 girls had not received any clitoral surgery. Our main finding was that at the time of interview; 73% (n=19) of the parent participants perceived the clitoral size of their child/children to be larger than normal, while 27% (n=7) perceived the clitoral size to be normal. Perceived normalcy and of enduring large size were near equal in distribution across the three treatment groups. Qualitative comments provided additional information regarding parental acceptance of enduring genital difference.

Conclusion: Normalcy is an aim of early genital surgery, as part of the management of CAH. Most parent- participants in this study perceived their child’s clitoral size to be larger than normal, irrespective of the treatment modality (surgery or no surgery). While parental perception of size-normalcy post treatment is only one outcome domain, it is useful in understanding the complexity of parental adaptation to CAH and its management. The low rate of parental perception of normalcy unrelated to different managements and our analysis of qualitative comments will demonstrate that most parents find enduring genital difference an acceptable outcome for their child.