title: Congenital adrenal hyperplasia patient perception of 'disorders of sex development' nomenclature.
abstract: BACKGROUND
  As the benefits of patient-centered care have become more widely recognized, it is important to understand patients' sentiments regarding aspects affecting their care. In an effort to display more sensitivity to patient concerns, the term "disorders of sex development" (DSD) was proposed in 2006 as new nomenclature to replace older terms that were considered to have negative connotations.
  
  
  METHODS
  The objective of the study was to examine the views of congenital adrenal hyperplasia (CAH) patients and their caregivers regarding the new nomenclature. The study was observational to evaluate the views of the CAH community, and the primary endpoint was perception of the term DSD. The study was conducted as a survey about views regarding DSD nomenclature. The survey was sent via email to eligible subjects. Along with a short introduction explaining the term DSD, the survey was sent to eligible CAH patients and their caregivers. 589 CAH patients or family members participated in the survey.
  
  
  RESULTS
  A total of 589 responses were received (255 classical females, 104 non-classical females, 174 males, 56 not specified) (547 U.S., 42 international) (128 CAH patients, 408 parents or other family members). 70.6% had never heard the term DSD. 71.0% disliked or strongly disliked the term DSD. 83.6% stated they did not identify with the term DSD. 76.0% felt that the term DSD has a negative effect on the CAH community. There was no significant difference in opinion of DSD between classical females and other CAH patients, between US and international, between surgical and non-surgical patients, or between patients and parents. There was no correlation with patient age.
  
  
  CONCLUSIONS
  Our results indicate that the majority of parents and patients with CAH are dissatisfied with the term DSD. Our results highlight the challenges within the field of DSD to reach a consensus regarding a sensitive topic and to bridge the gap between current medical practice and patient satisfaction. It is the authors' belief that reconsideration of the current nomenclature and ongoing dialogue between the medical community and patients will eventually lead to removal of stigmatization, better management protocols, and improved outcomes.
authors.affiliation: Department of Pediatric Endocrinology, Weill Cornell Medical Center, 505 East 70th Street, 3rd floor, New York, NY 10021 USA.
authors.forename: Karen
authors.initials: K
authors.lastname: Lin-Su
authors.affiliation: Department of Pediatric Endocrinology, Weill Cornell Medical Center, 505 East 70th Street, 3rd floor, New York, NY 10021 USA.
authors.forename: Oksana
authors.initials: O
authors.lastname: Lekarev
authors.affiliation: Department of Pediatric Urology, Weill Cornell Medical Center, 525 East 68th Street, Suite F-943, New York, NY 10065 USA.
authors.forename: Dix P
authors.initials: DP
authors.lastname: Poppas
authors.affiliation: Department of Pediatric Endocrinology, Weill Cornell Medical Center, 505 East 70th Street, 3rd floor, New York, NY 10021 USA.
authors.forename: Maria G
authors.initials: MG
authors.lastname: Vogiatzi
keywords: Congenital adrenal hyperplasia; Disorders of sex development; Nomenclature