Parent-Rated Severity of Illness and Anxiety among Caregivers of Children Born with a Disorder of Sex Development Including Ambiguous Genitalia

Christina M. Sharkey*, Dana M. Bakula, Cortney Wolfe-Christensen, Paul Austin, Laurence Baskin, Kerlly J. Bernabé, Yee Ming Chan, Earl Y Cheng, Alexandria M. Delozier, David A. Diamond, Rebecca E.H. Ellens, Allyson Fried, Denise Galan, Saul Greenfield, Thomas Kolon, Bradley Kropp, Yegappan Lakshmanan, Sabrina Meyer, Theresa Meyer, Natalie J. NokoffKristy J. Scott Reyes, Blake Palmer, Dix P. Poppas, Alethea Paradis, Amy Tishelman, Elizabeth B Yerkes, John M. Chaney, Amy B. Wisniewski, Larry L. Mullins

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

5 Scopus citations


Parents of children born with disorders of sex development (DSD) often experience anxiety, but risk factors, including parental perception of the severity of their child's DSD, have not been examined. We hypothesized that severity of illness (SOI) ratings would relate to parental anxiety, and would be higher for parents of children with a potentially life-threatening DSD (e.g., 21-hydroxylase deficiency). Methods: Eighty-nine parents (Mage = 33.0, 56.2% mothers) of 51 children (Mage in months = 8.7) with a DSD including ambiguous genitalia were recruited from 12 specialized DSD clinics. Parents completed questionnaires prior to genitoplasty, 6 months post-genitoplasty, and 12 months postgenitoplasty (if completed). Data were analyzed with linear mixed modeling. Results: Parental anxiety decreased over time, ?2(1) = 10.14, p > 0.01. A positive relationship between SOI and anxiety was found, with SOI being a strong predictor of anxiety (b = 0.53, p > 0.01; ?2[1] = 5.33, p > 0.05). An SOI by time interaction indicated SOI had an increasing effect on anxiety over time, b = 0.06, p > 0.05; ?2(1) = 6.30, p > 0.05. There was no diagnosis by SOI interaction. Conclusion: Parental anxiety decreased over time, but those with higher SOI ratings reported greater initial anxiety followed by slower resolution over time. Underlying etiology of DSD had no effect on the relationship between SOI and anxiety.

Original languageEnglish (US)
Pages (from-to)308-313
Number of pages6
JournalHormone Research in Paediatrics
Issue number5
StatePublished - Mar 1 2019


  • Anxiety
  • Disorders of sex development
  • Psychological aspects of disorders
  • Severity of illness

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Endocrinology, Diabetes and Metabolism
  • Endocrinology


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