title: Characterizing Early Psychosocial Functioning of Parents of Children with Moderate to Severe Genital Ambiguity due to Disorders of Sex Development.
abstract: OBJECTIVE
  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.
  
  
  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.
authors.affiliation: Department of Psychology, Oklahoma State University, Stillwater, Oklahoma.
authors.forename: Kristina I
authors.initials: KI
authors.lastname: Suorsa
authors.affiliation: Department of Psychology, Oklahoma State University, Stillwater, Oklahoma.
authors.forename: Alexandria J
authors.initials: AJ
authors.lastname: Mullins
authors.affiliation: Department of Psychology, Oklahoma State University, Stillwater, Oklahoma.
authors.forename: Alayna P
authors.initials: AP
authors.lastname: Tackett
authors.affiliation: Department of Urology, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma.
authors.forename: Kristy J Scott
authors.initials: KJ
authors.lastname: Reyes
authors.affiliation: Department of Surgery, Washington University School of Medicine/St. Louis Children's Hospital, St. Louis, Missouri.
authors.forename: Paul
authors.initials: P
authors.lastname: Austin
authors.affiliation: Department of Urology, University of California San Francisco Medical Center, San Francisco, California.
authors.forename: Laurence
authors.initials: L
authors.lastname: Baskin
authors.affiliation: Department of Urology, New York-Presbyterian/Weill Cornell Medical Center, New York, New York.
authors.forename: Kerlly
authors.initials: K
authors.lastname: Bernabé
authors.affiliation: Division of Urology, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois.
authors.forename: Earl
authors.initials: E
authors.lastname: Cheng
authors.affiliation: Pediatric Urology, Woman and Children's Hospital of Buffalo, Buffalo, New York.
authors.forename: Allyson
authors.initials: A
authors.lastname: Fried
authors.affiliation: Department of Urology, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma.
authors.forename: Dominic
authors.initials: D
authors.lastname: Frimberger
authors.affiliation: Department of Urology, New York-Presbyterian/Weill Cornell Medical Center, New York, New York.
authors.forename: Denise
authors.initials: D
authors.lastname: Galan
authors.affiliation: Department of Urology, University of California San Francisco Medical Center, San Francisco, California.
authors.forename: Lynette
authors.initials: L
authors.lastname: Gonzalez
authors.affiliation: Pediatric Urology, Woman and Children's Hospital of Buffalo, Buffalo, New York.
authors.forename: Saul
authors.initials: S
authors.lastname: Greenfield
authors.affiliation: Department of Urology, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma.
authors.forename: Bradley
authors.initials: B
authors.lastname: Kropp
authors.affiliation: Pediatric Urology, Woman and Children's Hospital of Buffalo, Buffalo, New York.
authors.forename: Sabrina
authors.initials: S
authors.lastname: Meyer
authors.affiliation: Division of Urology, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois.
authors.forename: Theresa
authors.initials: T
authors.lastname: Meyer
authors.affiliation: University of Colorado Denver/Children's Hospital Colorado, Denver, Colorado.
authors.forename: Natalie
authors.initials: N
authors.lastname: Nokoff
authors.affiliation: Department of Urology, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma.
authors.forename: Blake
authors.initials: B
authors.lastname: Palmer
authors.affiliation: Department of Urology, New York-Presbyterian/Weill Cornell Medical Center, New York, New York.
authors.forename: Dix
authors.initials: D
authors.lastname: Poppas
authors.affiliation: Department of Surgery, Washington University School of Medicine/St. Louis Children's Hospital, St. Louis, Missouri.
authors.forename: Alethea
authors.initials: A
authors.lastname: Paradis
authors.affiliation: Division of Urology, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Yerkes
authors.affiliation: Department of Urology, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma.
authors.forename: Amy B
authors.initials: AB
authors.lastname: Wisniewski
authors.affiliation: Department of Psychology, Oklahoma State University, Stillwater, Oklahoma. Electronic address: larry.mullins@okstate.edu.
authors.forename: Larry L
authors.initials: LL
authors.lastname: Mullins
mesh_terms: D058489:46, XX Disorders of Sex Development / Q000523:psychology; D000223:Adaptation, Psychological; D000312:Adrenal Hyperplasia, Congenital / Q000523:psychology; D000328:Adult; D001008:Anxiety Disorders / Q000175:diagnosis / Q000523:psychology*; D003866:Depressive Disorder / Q000175:diagnosis / Q000523:psychology*; D012734:Disorders of Sex Development / Q000523:psychology*; D005260:Female; D005783:Gender Identity; D006061:Gonadal Dysgenesis, 46,XY / Q000523:psychology; D006801:Humans; D007621:Karyotyping; D008297:Male; D008403:Mass Screening; D010290:Parents / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D013313:Stress Disorders, Post-Traumatic / Q000175:diagnosis / Q000523:psychology*; D011795:Surveys and Questionnaires; D014424:Turner Syndrome / Q000523:psychology
keywords: anxiety; depression; disorders of sex development; post-traumatic; quality of life; stress disorders