{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,8]],"date-time":"2026-05-08T00:47:22Z","timestamp":1778201242734,"version":"3.51.4"},"reference-count":30,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2014,9,1]],"date-time":"2014-09-01T00:00:00Z","timestamp":1409529600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Clinical Endocrinology"],"published-print":{"date-parts":[[2015,2]]},"abstract":"<jats:title>Summary<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>Few studies have focused on the quality of life (QoL) of patients with disorders of sex development (<jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>). Our aim was to evaluate QoL in <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content> patients with defined diagnoses followed until adulthood in a single tertiary centre.<\/jats:p><\/jats:sec><jats:sec><jats:title>Patients and Methods<\/jats:title><jats:p>Adult patients with <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content> (56 patients with 46,<jats:styled-content style=\"fixed-case\">XX DSD<\/jats:styled-content> \u2013 49 with female social sex and 7 with male social sex as well as 88 patients with 46,<jats:styled-content style=\"fixed-case\">XY DSD<\/jats:styled-content> \u2013 54 with female social sex and 34 with male social sex).<\/jats:p><\/jats:sec><jats:sec><jats:title>Measurements<\/jats:title><jats:p>QoL using <jats:styled-content style=\"fixed-case\">WHOQOL<\/jats:styled-content>\u2010Bref questionnaire.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Both patients with 46,<jats:styled-content style=\"fixed-case\">XX DSD<\/jats:styled-content> and patients with 46,<jats:styled-content style=\"fixed-case\">XY DSD<\/jats:styled-content> had similar QoL scores on the <jats:styled-content style=\"fixed-case\">WHOQOL<\/jats:styled-content>\u2010Bref, comparable to the scores of the Brazilian general population. The chronological age at the start of treatment was negatively and significantly associated with general QoL score. Patients with male social sex <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content> had better scores on the psychological domain than patients with female social sex <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>, as found in the Brazilian general population. In addition, among the 46,<jats:styled-content style=\"fixed-case\">XY DSD<\/jats:styled-content> group, the male social sex patients had better QoL compared with the female social sex patients. There was a positive and significant correlation between sexual performance and general QoL, although it explained only 4% of the variability of the general QoL score. The most influencing variables were general health, positive feelings and spirituality, religion and personal beliefs, each of them contributing with 18% of the variability of the general QoL score.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Our large cohort of adult patients with <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>, which was followed by a multidisciplinary team in a single tertiary centre, had good QoL in adulthood; in addition, late treatment compromised the QoL of patients with <jats:styled-content style=\"fixed-case\">DSD<\/jats:styled-content>, whereas sexual performance has little influence on QoL.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cen.12572","type":"journal-article","created":{"date-parts":[[2014,7,30]],"date-time":"2014-07-30T05:21:11Z","timestamp":1406697671000},"page":"274-279","source":"Crossref","is-referenced-by-count":26,"title":["Quality of life in a large cohort of adult Brazilian patients with 46,XX and 46,XY disorders of sex development from a single tertiary centre"],"prefix":"10.1111","volume":"82","author":[{"given":"Rita","family":"Cassia Amaral","sequence":"first","affiliation":[{"name":"Unidade de Endocrinologia do Desenvolvimento Laborat\u00f3rio de Horm\u00f4nios e Gen\u00e9tica Molecular LIM\/42 Disciplina de Endocrinologia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marlene","family":"Inacio","sequence":"additional","affiliation":[{"name":"Unidade de Endocrinologia do Desenvolvimento Laborat\u00f3rio de Horm\u00f4nios e Gen\u00e9tica Molecular LIM\/42 Disciplina de Endocrinologia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vinicius N.","family":"Brito","sequence":"additional","affiliation":[{"name":"Unidade de Endocrinologia do Desenvolvimento Laborat\u00f3rio de Horm\u00f4nios e Gen\u00e9tica Molecular LIM\/42 Disciplina de Endocrinologia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tania A. S. S.","family":"Bachega","sequence":"additional","affiliation":[{"name":"Unidade de Endocrinologia do Desenvolvimento Laborat\u00f3rio de Horm\u00f4nios e Gen\u00e9tica Molecular LIM\/42 Disciplina de Endocrinologia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"suffix":"Jr","given":"Ari A.","family":"Oliveira","sequence":"additional","affiliation":[{"name":"Unidade de Endocrinologia do Desenvolvimento Laborat\u00f3rio de Horm\u00f4nios e Gen\u00e9tica Molecular LIM\/42 Disciplina de Endocrinologia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sorahia","family":"Domenice","sequence":"additional","affiliation":[{"name":"Unidade de Endocrinologia do Desenvolvimento Laborat\u00f3rio de Horm\u00f4nios e Gen\u00e9tica Molecular LIM\/42 Disciplina de Endocrinologia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Francisco T.","family":"Denes","sequence":"additional","affiliation":[{"name":"Disciplina de Urologia Departamento de Cirurgia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria Helena","family":"Sircili","sequence":"additional","affiliation":[{"name":"Disciplina de Urologia Departamento de Cirurgia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ivo J. P.","family":"Arnhold","sequence":"additional","affiliation":[{"name":"Unidade de Endocrinologia do Desenvolvimento Laborat\u00f3rio de Horm\u00f4nios e Gen\u00e9tica Molecular LIM\/42 Disciplina de Endocrinologia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Guiomar","family":"Madureira","sequence":"additional","affiliation":[{"name":"Unidade de Endocrinologia do Desenvolvimento Laborat\u00f3rio de Horm\u00f4nios e Gen\u00e9tica Molecular LIM\/42 Disciplina de Endocrinologia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Larissa","family":"Gomes","sequence":"additional","affiliation":[{"name":"Unidade de Endocrinologia do Desenvolvimento Laborat\u00f3rio de Horm\u00f4nios e Gen\u00e9tica Molecular LIM\/42 Disciplina de Endocrinologia Hospital das Cl\u00ednicas da Faculdade de Medicina da Universidade de S\u00e3o Paulo S\u00e3o Paulo Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elaine M. 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