BSPED2023 Oral Communications Oral Communications 10 (6 abstracts)
Parental perspective on genitoplasty for girls with virilising congenital adrenal hyperplasia
Arianna Mariotto , Supul Hennayake , Tamas Cserni , Indi Banerjee , Gail Busby , Mars Skae , Leena Patel , Raja Padidela , Philip Murray , Jaqueline Nicholson , Julie Jones , Charlotte Richmond & Anju Goyal
Manchester University NHS Foundation Trust, Manchester, United Kingdom
Introduction: In response to the proposed move to decommission genitoplasty surgery for DSD, we investigated parental views on surgery for girls with virilising 46XX Congenital Adrenal Hyperplasia (CAH).
Materials and Methods: In this prospective study, after ethical approval, parents of surgically treated CAH girls completed an electronic questionnaire.
Results: 50 parents were contacted, 35 provided email address and 11 completed the questionnaires. Current median patients age is 13 (range 3-27) years. Genitoplasty done at median age: 12.7 (range 5-99) months. CAH had a negative impact on parental wellbeing (8/11); the condition had a positive effect on their bonding with child (6/11). Pre-surgery, the appearance of the genitalia reduced parental confidence in other carers (6/11) and reduced bonding with family members (3/11). Following surgery in infancy, 3 felt that the condition negatively affected their daughters’ self-esteem and psychological wellbeing. Half of the parents found the decision for surgery challenging. Most (10/11) felt supported and well-informed by medical team and were satisfied with surgical outcomes. Only one would make different choice. The majority (8/11) disagreed with proposal to stop surgery, two did not give opinion and one agreed. Parent reported justifications for early surgery included avoidance of stigmatisation, reduced discomfort/anxiety, improved self-esteem.
Conclusion: The majority of parents (91%) were satisfied with their decision for surgery and 73% would prefer the option for early childhood surgery to be available. Parental responses suggested that following early childhood surgery, majority did not suffer from negative sequelae of differences in genital appearance. Results from a larger cohort will be required to confirm these findings.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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