CAH appearance surgery study Version 1
Research type
Research Study
Full title
Managing large clitoris in childhood in girls with CAH: An investigation of the psychological impact of current treatment strategies.
IRAS ID
166280
Contact name
Elizabeth C Crowne
Contact email
Sponsor organisation
University Hospitals Bristol NHS Foundation Trust
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
Girls born with Congenital Adrenal Hyperplasia (CAH) and clitoromegaly (large clitoris)would have routinely undergone clitoral reduction surgery in infancy. Some centres now defer surgery following concerns raised by research into adult sexual function for those having undergone such surgery in infancy. There are no data for the impact of growing up with clitoromegaly, nor are there any regarding the psychological outcomes in childhood of surgery, with which to inform clinical and parental decision making.
We will seek families’ accounts of how their daughter's cliteromegaly has or has not had an impact on them and their day to day life. Paediatric Clinical Psychologists will interview families, both where the child has had clitoral reduction surgery and where she has not. Analysis will provide preliminary insights as to the psychological impact of the presence of a large clitoris for parents, and, where possible, for the affected child. Importantly, we should also glean preliminary information about the impact of the health care management of clitoromegaly, with or without surgical reduction.
The results of this research will provide information of international interest, as the views of clinicians can vary as to the possible benefit of size reduction surgery for infant girls with a large clitoris. Similarly, parents commonly have grave concerns about either option of surgical reduction or of leaving the clitoris a larger than normal size.
The study results will be used to develop a structured assessment and data collection proforma for use in a further national study.
Recruitment will take place in the South West and North West of England via specialist teams in Bristol and Manchester. English speaking families of children aged under 16 with a diagnosis of CAH and clitoromegaly will be eligible. Participant parents would give one interview and consider the participation of their affected child aged 5-16.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
15/SW/0253
Date of REC Opinion
14 Dec 2015
REC opinion
Further Information Favourable Opinion