PD02-10: Changes in the Approach of SPU Members to DSD Management

Barry Kogan*, Albany, NY, Melissa Gardner, Ann Arbor, MI, Kristina Suorsa-Johnson, Ann Arbor, MI, Peter Lee, David Mauger, Hershey, PA, David Sandberg, Ann Arbor, MI

Introduction: Since the time when Optimal Gender Policy was popular, advocates, scientists and clinicians have tended to more disclosure, shared decision-making and delayed operative intervention in the management of DSD patients. To determine the extent to which members of the SPU have changed their opinions, we surveyed pediatric urologists in 3 waves; 2003, 2010 and 2020.

Methods: We designed an on-line survey with 2 CAH cases (moderate CAH and severe CAH) and asked virtually identical questions regarding gender of rearing, timing of surgery and decision making and disclosure to patient for each wave and each case. The responses were compared.

Results: 133, 118 and 160 pediatric urologists responded (69%, 57% and 61% of eligible). Demographics of the respondents remained largely unchanged except for an increase in women in the last survey.

For the moderate CAH case, pediatric urologists overwhelmingly recommended that the parents decide on timing of surgery, with only a slight increase to 20% recommending the patient decide in the 2020 survey. Timing of clitoroplasty shifted a bit older going from 90% recommending < 1yr to 68% in 2020. Recommendations for vaginoplasty remained relatively stable with about 60% recommending < 1 yr in each wave. 15% recommended either no disclosure that surgery had occurred or as an adult in 2003, vs 2% in 2020. 

For Severe CAH: There was no change in recommendations for gender of rearing (>80% female), although 22% chose “other (eg, Intersex, non-binary)” (a new option) in 2020. Recommendation for the patient deciding on the need for genital surgery if raised as a boy increased from 22% in 2003 to 36% in 2010 but decreased to 10% in 2020; if as a girl the rate increased to only 10% favoring the patient deciding. If the child was raised as a boy, early hypospadias surgery was recommended but gonadectomy changed from 67% < 1yr (2003) to 67% > 10 yrs (2020). In 2003 15% recommend adult or no disclosure with 0% choosing those options in 2020. If raised as a girl, there was a trend towards less early clitoroplasty (92 vs. 68% < 1 yr) with little change in vaginoplasty (about 60% < 1 yr). The 14% who recommended adult or no disclosure dropped to 2% in 2020.

Conclusions: Pediatric urologists overwhelmingly continue to recommend that parents make the major decisions on gender of rearing and surgery in CAH patients. There were trends towards less early clitoroplasty in moderate cases and less gonadectomy in severe CAH. There was uniform recommendation of childhood/adolescent disclosure by 2020.

Source of Funding: None