LAUSR

OBJECTIVES Differences/disorders of sex development (DSD) medical terminology has been viewed negatively by some affected individuals. A clinical population of patients with DSD and their caregivers were surveyed regarding DSD nomenclature, hypothesizing that those unaffiliated with support groups would have more favorable attitudes toward DSD nomenclature. METHODS English and Spanish-speaking patients with DSD (age ≥13 years) and their caregivers at 5 national tertiary care clinics were recruited from 07/2016-12/2018. No diagnoses were excluded. Participants completed a survey rating commonly used DSD terminology. Responses were compared between subgroups, including support group affiliation. RESULTS Of 185 potential participants approached, 133 completed the survey (72% response rate). Congenital adrenal hyperplasia (33%) was the most common diagnosis. 'Variation of sex development' was the most liked term (37%) but was not more significantly liked than 'disorders of sex development' (27%) (p=0.16). No term was liked by a majority of respondents. 'Disorders of sex development' (37%) and 'intersex' (53%) were the only terms most frequently viewed unfavorably. Support group members were significantly more likely to dislike the term 'intersex' (p=0.02) and to like 'variation of sex development' (p=0.02). CONCLUSIONS A clinical population of patients and their caregivers had generally neutral attitudes toward a range of DSD nomenclature. Support group affiliation was associated with clearer terminology preferences. 'Variation of sex development' was the most liked term, and 'disorders of sex development' and 'intersex' were the most disliked. No term was liked by most respondents, and no clear alternative to the present DSD nomenclature was identified.