Exploring Factors Associated with Decisions about Feminizing Genitoplasty in Differences of Sex Development |
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| Institution: | 1. Boston Children''s Hospital and Harvard Medical School, Boston, Massachusetts;2. University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma;3. Oklahoma State University, Stillwater, Oklahoma;4. Texas Children''s Hospital and Baylor College of Medicine, Houston, Texas;5. University of California San Francisco Medical Center, UCSF School of Medicine, San Francisco, California;6. Lurie Children''s Hospital of Chicago, Feinberg School of Medicine of Northwestern University, Chicago, Illinois;7. John R. Oishei Children''s Hospital, Buffalo, New York;8. Children''s Hospital of Philadelphia, Perelman School of Medicine at University of Pennsylvania, Philadelphia, Pennsylvania;9. OKC Kids, Oklahoma City, Oklahoma;10. Children''s Hospital of Michigan, Wayne State University School of Medicine, Detroit, Michigan;11. Childrens Hospital of Colorado, University of Colorado Anschutz Medical Campus, Aurora, Colorado;12. Cook Children''s Medical Center, University of Oklahoma, College of Medicine, Oklahoma City, Oklahoma;13. St. Louis Children''s Hospital, Washington University School of Medicine, St. Louis, Missouri;14. New York Presbyterian Hospital, Weill Cornell Medical College, New York City, New York;15. Golisano Children''s Hospital, University of Rochester School of Medicine and Dentistry, Rochester, New York;16. Boston College, Morrissey College of Arts and Sciences, Boston, Massachusetts |
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| Abstract: | Study ObjectiveInfants with genital development considered atypical for assigned female sex may undergo feminizing genitoplasty (clitoroplasty and/or vaginoplasty) in early life. We sought to identify factors associated with parent/caregiver decisions regarding genitoplasty for their children with genital virilization.DesignLongitudinal, observational studySettingTwelve pediatric centers in the United States with multidisciplinary differences/disorders of sex development clinics, 2015-2020ParticipantsChildren under 2 years old with genital appearance atypical for female sex of rearing and their parents/caregiversInterventions/Outcome MeasuresData on the child's diagnosis and anatomic characteristics before surgery were extracted from the medical record. Parents/caregivers completed questionnaires on psychosocial distress, experience of uncertainty, cosmetic appearance of their child's genitalia, and demographic characteristics. Urologists rated cosmetic appearance. For 58 patients from the study cohort with genital virilization being raised as girls or gender-neutral, we compared these data across 3 groups based on the child's subsequent surgical intervention: (i) no surgery (n = 5), (ii) vaginoplasty without clitoroplasty (V-only) (n = 15), and (iii) vaginoplasty and clitoroplasty (V+C) (n = 38).ResultsFathers’ and urologists’ ratings of genital appearance were more favorable in the no-surgery group than in the V-only and V+C groups. Clitorophallic length was greater in the V+C group compared with the V-only group, with substantial overlap between groups. Mothers’ depressive and anxious symptoms were lower in the no-surgery group compared with the V-only and V+C groups.ConclusionsSurgical decisions were associated with fathers’ and urologists’ ratings of genital appearance, the child's anatomic characteristics, and mothers’ depressive and anxious symptoms. Further research on surgical decision-making is needed to inform counseling practices. |
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