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Agreement on nomenclature can enhance communication among clinicians, researchers, patients, and their families. However, disagreements over the implications of nomenclature can also result in a proliferation of terms contributing to confusion. The objective of this pilot study was to assess the connotative meaning assigned by adolescent patients with a DSD and parents to the terms used to describe their medical condition. In a sample of 27 adolescents\/young adults with a DSD and 22 of their parents\/caregivers recruited from three pediatric medical centers in mid-West and mid-Atlantic states, a semantic rating scale measuring self-esteem was used to characterize the connotative meaning ascribed to the person\u2019s specific diagnosis (or anatomical phenotype), the umbrella terms \u201cdisorders of sex development,\u201d \u201cintersex,\u201d and \u201cyourself\u201d\/\u201cyour child.\u201d Youth and parents rated themselves or their children more positively compared to how they rated either the specific diagnosis, the umbrella terms DSD or intersex. The ratings for the latter three terms were generally neutral and did not significantly differ from each other. These pilot findings suggest that neither youth with DSD nor their parents equate the person with their diagnosis. They also evaluated the person more positively than any of the diagnostic or umbrella terms rated. In contrast with previous studies assessing \u201cpreferences\u201d for particular terms, this study suggests a novel strategy for assessing the personal \u201cmeanings\u201d ascribed to each.<\/jats:p>","DOI":"10.1007\/s10508-025-03304-1","type":"journal-article","created":{"date-parts":[[2025,11,25]],"date-time":"2025-11-25T16:06:22Z","timestamp":1764086782000},"page":"4133-4143","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Patient and Parent Perceptions of Disorders of Sex Development Terminology: A Pilot Study"],"prefix":"10.1007","volume":"54","author":[{"given":"Stephanie","family":"Sharp","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Linford","family":"Williams","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Beverly","family":"Yashar","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lauren","family":"Mohnach","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J. 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Hormone Research, 68(Supp. l2), 1\u2013119.","DOI":"10.1159\/isbn.978-3-318-01488-4"}],"container-title":["Archives of Sexual Behavior"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s10508-025-03304-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s10508-025-03304-1","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s10508-025-03304-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,30]],"date-time":"2025-12-30T14:32:47Z","timestamp":1767105167000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s10508-025-03304-1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,11]]},"references-count":45,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2025,11]]}},"alternative-id":["3304"],"URL":"https:\/\/doi.org\/10.1007\/s10508-025-03304-1","relation":{},"ISSN":["0004-0002","1573-2800"],"issn-type":[{"value":"0004-0002","type":"print"},{"value":"1573-2800","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,11]]},"assertion":[{"value":"28 August 2022","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"5 September 2025","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 September 2025","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 November 2025","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"DES is an advisory board member of Accord Alliance, a nonprofit convener of stakeholders interested in improving health care delivery for patients and families affected by DSD. No other conflicts or competing interests to report.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflicts of Interest"}},{"value":"The study protocol was approved by the respective medical centers\u2019 institutional review boards. Written informed consent was obtained from a parent\/caregiver and assent from the participating youth.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical Approval"}}]}}