Background: As the benefits of patient-centered care have become more widely recognized, it is important to\nunderstand patientsââ?¬â?¢ sentiments regarding aspects affecting their care. In an effort to display more sensitivity to\npatient concerns, the term ââ?¬Å?disorders of sex developmentââ?¬Â (DSD) was proposed in 2006 as new nomenclature\nto replace older terms that were considered to have negative connotations.\nMethods: The objective of the study was to examine the views of congenital adrenal hyperplasia (CAH)\npatients and their caregivers regarding the new nomenclature. The study was observational to evaluate the\nviews of the CAH community, and the primary endpoint was perception of the term DSD. The study was\nconducted as a survey about views regarding DSD nomenclature. The survey was sent via email to eligible\nsubjects. Along with a short introduction explaining the term DSD, the survey was sent to eligible CAH\npatients and their caregivers. 589 CAH patients or family members participated in the survey.\nResults: A total of 589 responses were received (255 classical females, 104 non-classical females, 174 males,\n56 not specified) (547 U.S., 42 international) (128 CAH patients, 408 parents or other family members). 70.6%\nhad never heard the term DSD. 71.0% disliked or strongly disliked the term DSD. 83.6% stated they did not\nidentify with the term DSD. 76.0% felt that the term DSD has a negative effect on the CAH community. There\nwas no significant difference in opinion of DSD between classical females and other CAH patients, between\nUS and international, between surgical and non-surgical patients, or between patients and parents. There was\nno correlation with patient age.\nConclusions: Our results indicate that the majority of parents and patients with CAH are dissatisfied with the\nterm DSD. Our results highlight the challenges within the field of DSD to reach a consensus regarding a\nsensitive topic and to bridge the gap between current medical practice and patient satisfaction. It is the\nauthorsââ?¬â?¢ belief that reconsideration of the current nomenclature and ongoing dialogue between the medical\ncommunity and patients will eventually lead to removal of stigmatization, better management protocols, and\nimproved outcomes.
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