Congenital adrenal hyperplasia patient perception of 'disorders of sex development' nomenclature

International Journal of Pediatric Endocrinology
Karen Lin-SuMaria G Vogiatzi

Abstract

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. 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. 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 o...Continue Reading

References

Apr 21, 2006·Archives of Disease in Childhood·I A HughesUNKNOWN ESPE Consensus Group
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Feb 19, 2008·Best Practice & Research. Clinical Endocrinology & Metabolism·Ieuan A Hughes
Sep 6, 2008·Journal of the American Board of Family Medicine : JABFM·Thomas C Rosenthal
Aug 17, 2010·Journal of Pediatric Urology·J H DaviesP S Malone
Oct 11, 2011·Pediatric Clinics of North America·Saroj NimkarnMaria I New
Aug 2, 2014·American Journal of Medical Quality : the Official Journal of the American College of Medical Quality·Khaled MohammedMohammad H Murad

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Citations

May 3, 2016·Journal of Pediatric Urology·Pierre D E MouriquandPeter Lee
Jun 1, 2016·Frontiers in Pediatrics·Ricardo González, Barbara M Ludwikowski
Feb 22, 2017·LGBT Health·Heino F L Meyer-Bahlburg
Oct 20, 2017·Journal of Family Nursing·Louise FlemingMarcia Van Riper
Jan 28, 2020·Journal of Sex Research·Elena BenneckeClaudia Wiesemann
Jan 31, 2020·Current Urology·Mary García-AceroAdriana Rojas
Dec 23, 2020·Problemy e̊ndokrinologii·Nikolay D ShiryaevVladimir V Sizonov
Oct 13, 2020·Journal of Pediatric Urology·Konrad M SzymanskiUNKNOWN Life with Congenital Adrenal Hyperplasia Study Group
May 8, 2021·Endocrine Reviews·Hedi L Claahsen-van der GrintenPerrin C White

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