{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T07:20:42Z","timestamp":1777620042070,"version":"3.51.4"},"reference-count":35,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2019,5,15]],"date-time":"2019-05-15T00:00:00Z","timestamp":1557878400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Clinical Endocrinology"],"published-print":{"date-parts":[[2019,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>Changes of sex hormone levels in disorders of sex development (<jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>) can affect the body, including the vocal folds, during and after foetal development. The voice is a gender characteristic that may also be affected. There is a lack of knowledge on voice alteration in <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>. To explore this in different forms of <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>, we describe the prevalence of voice alterations and investigate patient satisfaction with voice.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>The study is part of dsd\u2010<jats:styled-content style=\"fixed-case\">LIFE<\/jats:styled-content>, a multicentre cross\u2010sectional clinical evaluation project assessing the long\u2010term outcomes of surgical, hormonal and psychological interventions in individuals with <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>.<\/jats:p><\/jats:sec><jats:sec><jats:title>Patients<\/jats:title><jats:p>The study included 1040 individuals with different forms of <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>, that is Turner and Klinefelter syndromes, different degrees of gonadal dysgenesis and 46 <jats:styled-content style=\"fixed-case\">XY DSD<\/jats:styled-content>. Participants were recruited through patient advocacy groups and health care.<\/jats:p><\/jats:sec><jats:sec><jats:title>Measurements<\/jats:title><jats:p>Satisfaction with voice, Adam's apple, if patient's self\u2010identified gender was mistaken on the phone leading to distress.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A vast majority of the participants with <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content> (between 58.3% to 82% in various groups) were not satisfied with their voice, and approximately 15% (n\u00a0=\u00a0147) were mistaken on the phone in accordance with self\u2010identified gender. For 102 participants, this caused distress.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>We have identified that voice problems are a cause of distress in all forms of <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>. This result needs to be confirmed and compared with controls. We recommend that evaluation of the voice should be included in future international guidelines for management of <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cen.14000","type":"journal-article","created":{"date-parts":[[2019,4,26]],"date-time":"2019-04-26T13:17:10Z","timestamp":1556284630000},"page":"219-227","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Voice dissatisfaction in individuals with a disorder of sex development"],"prefix":"10.1111","volume":"91","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3409-8160","authenticated-orcid":false,"given":"Ulrika","family":"Nygren","sequence":"first","affiliation":[{"name":"Division of Speech and Language Pathology Department of Clinical Science, Intervention and Technology Karolinska Institutet Stockholm Sweden"},{"name":"Functional Area Speech &amp; Language Pathology Karolinska University Hospital Stockholm Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria","family":"S\u00f6dersten","sequence":"additional","affiliation":[{"name":"Division of Speech and Language Pathology Department of Clinical Science, Intervention and Technology Karolinska Institutet Stockholm Sweden"},{"name":"Functional Area Speech &amp; Language Pathology Karolinska University Hospital Stockholm Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ute","family":"Thyen","sequence":"additional","affiliation":[{"name":"Klinik fur Kinder\u2010 und Jugendmedizin Universitat zu Lubeck Lubeck Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Birgit","family":"K\u00f6hler","sequence":"additional","affiliation":[{"name":"Klinik f\u00fcr P\u00e4diatrische Endokrinologie und Diabetologie Charit\u00e9 \u2010 Universit\u00e4tsmedizin Berlin Humboldt\u2010Universit\u00e4t zu Berlin Berlin 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