Characterizing early psychosocial functioning of parents of children with moderate to severe genital ambiguity due to disorders of sex development

Kristina I. Suorsa, Alexandria J. Mullins, Alayna P. Tackett, Kristy J. Scott Reyes, Paul Austin, Laurence Baskin, Kerlly Bernabé, Earl Cheng, Allyson Fried, Dominic Frimberger, Denise Galan, Lynette Gonzalez, Saul Greenfield, Bradley Kropp, Sabrina Meyer, Theresa Meyer, Natalie Nokoff, Blake Palmer, Dix Poppas, Alethea ParadisElizabeth Yerkes, Amy B. Wisniewski, Larry L. Mullins*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

40 Scopus citations


Purpose We examined the psychosocial characteristics of parents of children with disorders of sex development at early presentation to a disorders of sex development clinic. Parental anxiety, depression, quality of life, illness uncertainty and posttraumatic stress symptoms were assessed. Additionally we evaluated the relationship of assigned child gender to parental outcomes. Materials and Methods A total of 51 parents of children with ambiguous or atypical genitalia were recruited from 7 centers specializing in treatment of disorders of sex development. At initial assessment no child had undergone genitoplasty. Parents completed the Cosmetic Appearance Rating Scale, Beck Anxiety Inventory, Beck Depression Inventory, SF-36, Parent Perception of Uncertainty Scale and Impact of Event Scale-Revised. Results A large percentage of parents (54.5%) were dissatisfied with the genital appearance of their child, and a small but significant percentage reported symptoms of anxiety, depression, diminished quality of life, uncertainty and posttraumatic stress. Few gender differences emerged. Conclusions Although many parents function well, a subset experience significant psychological distress around the time of diagnosis of a disorder of sex development in their child. Early screening to assess the need for psychosocial interventions is warranted.

Original languageEnglish (US)
Pages (from-to)1737-1742
Number of pages6
JournalJournal of Urology
Issue number6
StatePublished - Dec 2015


  • anxiety
  • depression
  • disorders of sex development
  • post-traumatic
  • quality of life
  • stress disorders

ASJC Scopus subject areas

  • Urology


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