{"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":1778201242118,"version":"3.51.4"},"reference-count":27,"publisher":"Oxford University Press (OUP)","issue":"12","license":[{"start":{"date-parts":[[2019,11,27]],"date-time":"2019-11-27T00:00:00Z","timestamp":1574812800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100011102","name":"European Union Seventh Framework Programme","doi-asserted-by":"publisher","award":["FP7\/2007\u20132013"],"award-info":[{"award-number":["FP7\/2007\u20132013"]}],"id":[{"id":"10.13039\/100011102","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2019,12,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>STUDY QUESTION<\/jats:title>\n                  <jats:p>What are the levels of breast development and satisfaction in women with a Disorder\/Difference of Sex Development (DSD)?<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>SUMMARY ANSWER<\/jats:title>\n                  <jats:p>Compared with normative data, women with DSD reached lower Tanner stages and reported less breast satisfaction.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>WHAT IS KNOWN ALREADY<\/jats:title>\n                  <jats:p>Women with DSD may have chromosomal and hormonal variations that can impact typical breast development. While much emphasis is placed on genital development in this group, little is known about breast development, satisfaction and their association.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>STUDY DESIGN, SIZE, DURATION<\/jats:title>\n                  <jats:p>Data collection was part of the cross-sectional European multicenter dsd-LIFE study. Fourteen recruiting sites included 1040 participants between February 2014 and September 2015.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>PARTICIPANTS\/MATERIALS, SETTING, METHODS<\/jats:title>\n                  <jats:p>A total of 695 female-identifying participants were included (Turner n\u2009=\u2009332, 46,XY DSD n\u2009=\u2009141 and congenital adrenal hyperplasia n\u2009=\u2009222), with a median age of 28\u00a0years. Clinical (i.e. history of hormone and surgical treatments, Tanner breast examination) and patient-reported (i.e. breast satisfaction, relationship status, sexual satisfaction and experienced femininity) data was collected by independent trained research staff. The relationship between breast development, satisfaction and femininity was assessed. Control data on breast development and satisfaction in women without DSD was retrieved from the literature.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>MAIN RESULTS AND THE ROLE OF CHANCE<\/jats:title>\n                  <jats:p>Of the 695 participants, 61% had received estrogen replacement and 51% puberty induction therapy, whereas 2% had received breast augmentation surgery. Approximately 65% of participants had reached Tanner breast stage 5, which is substantially less than the general population (90%). Breast satisfaction was lower than normative data as well (P\u2009&amp;lt;\u20090.001, Cohen\u2019s d\u2009=\u20090.45). Breast size and breast satisfaction were associated with feelings of femininity.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>LIMITATIONS, REASONS FOR CAUTION<\/jats:title>\n                  <jats:p>Limitations include the sample representativeness (e.g. regarding the clinical heterogeneity) and the limited in-depth knowledge on (prior) hormonal regimens. Furthermore, no (matched) control data was collected as part of this study.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>WIDER IMPLICATIONS OF THE FINDINGS<\/jats:title>\n                  <jats:p>In order to support the psychosexual well-being of women with DSD, enhancing breast development by sufficient hormone replacement and possible augmentation surgery is advocated. The scope of DSD management should be beyond genital development only and consider breasts as well.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>STUDY FUNDING\/COMPETING INTEREST(S)<\/jats:title>\n                  <jats:p>The study was funded by the European Union Seventh Framework Program (FP7\/2007\u20132013) under grant agreement no. 305\u2009373. There are no competing interests.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>TRIAL REGISTRATION NUMBER<\/jats:title>\n                  <jats:p>German Clinical Trials Register: Registration identification number: DRKS00006072.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/humrep\/dez230","type":"journal-article","created":{"date-parts":[[2019,10,9]],"date-time":"2019-10-09T23:37:12Z","timestamp":1570664232000},"page":"2410-2417","source":"Crossref","is-referenced-by-count":11,"title":["Breast development and satisfaction in women with disorders\/differences of sex development"],"prefix":"10.1093","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4382-7000","authenticated-orcid":false,"given":"Tim C","family":"van de Grift","sequence":"first","affiliation":[{"name":"Department of Plastic Reconstructive and Hand Surgery, Amsterdam UMC (VU University Medical Center), Amsterdam, the Netherlands"},{"name":"Department of Medical Psychology (Gender and Sexology), Amsterdam UMC (VU University Medical Center), Amsterdam, the Netherlands"},{"name":"Amsterdam Public Health Institute, Amsterdam, the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Baudewijntje P C","family":"Kreukels","sequence":"additional","affiliation":[{"name":"Department of Medical Psychology (Gender and Sexology), Amsterdam UMC (VU University Medical Center), Amsterdam, the Netherlands"},{"name":"Amsterdam Public Health Institute, Amsterdam, the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"dsd-LIFE","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2019,11,27]]},"reference":[{"key":"2019123012291381100_ref1","doi-asserted-by":"crossref","first-page":"239","DOI":"10.1159\/000356922","article-title":"Physiological estrogen replacement therapy for puberty induction in girls: a clinical observational study","volume":"81","author":"Ankarberg-Lindgren","year":"2014","journal-title":"Horm Res Paediatr"},{"key":"2019123012291381100_ref2","doi-asserted-by":"crossref","first-page":"95","DOI":"10.1016\/j.jpeds.2005.08.043","article-title":"Quality of life after growth hormone therapy and induced puberty in women with Turner syndrome","volume":"148","author":"Bannink","year":"2006","journal-title":"J Pediatr"},{"key":"2019123012291381100_ref3","doi-asserted-by":"crossref","first-page":"265","DOI":"10.1111\/j.1365-2265.2008.03446.x","article-title":"Puberty induction in Turner syndrome: results of oestrogen treatment on development of secondary sexual characteristics, uterine dimensions and serum hormone levels","volume":"70","author":"Bannink","year":"2009","journal-title":"Clin Endocrinol (Oxf)"},{"key":"2019123012291381100_ref4","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1016\/j.anplas.2011.11.004","article-title":"Morphologie mammaire dans le syndrome de Turner. \u00c9tude clinique prospective multicentrique de 21 cas","volume":"57","author":"Bartolin","year":"2012","journal-title":"Ann Chirurg Plast Esth\u00e9tique"},{"key":"2019123012291381100_ref5","doi-asserted-by":"crossref","first-page":"419","DOI":"10.1007\/978-3-642-85226-8_45","volume-title":"In Immunology of Silicones","author":"Cook","year":"1996"},{"key":"2019123012291381100_ref6","author":"Department of Ministry of Health","year":"2017,"},{"key":"2019123012291381100_ref7","doi-asserted-by":"crossref","first-page":"15","DOI":"10.1080\/00224499.2013.816260","article-title":"Body image and sexuality in Indonesian adults with a disorder of sex development (DSD)","volume":"52","author":"Ediati","year":"2015","journal-title":"J Sex Res"},{"key":"2019123012291381100_ref8","doi-asserted-by":"crossref","first-page":"526","DOI":"10.1038\/pr.2016.125","article-title":"Glandular breast tissue volume by magnetic resonance imaging in 100 healthy peripubertal girls: evaluation of clinical Tanner staging","volume":"80","author":"Fugl","year":"2016","journal-title":"Pediatr Res"},{"key":"2019123012291381100_ref9","doi-asserted-by":"crossref","first-page":"21","DOI":"10.1186\/s13633-015-0017-z","article-title":"Psychosexual development and quality of life outcomes in females with congenital adrenal hyperplasia","volume":"2015","author":"Kanhere","year":"2015","journal-title":"Int J Pediatr Endocrinol"},{"key":"2019123012291381100_ref10","doi-asserted-by":"crossref","first-page":"599","DOI":"10.4103\/2230-8210.98018","article-title":"Pubertal development among girls with classical congenital adrenal hyperplasia initiated on treatment at different ages","volume":"16","author":"Kulshreshtha","year":"2012","journal-title":"Indian J Endocrinol Metabol"},{"key":"2019123012291381100_ref11","doi-asserted-by":"crossref","first-page":"523","DOI":"10.1530\/EJE-12-0444","article-title":"Individualised vs fixed dose of oral 17\u03b2-oestradiol for induction of puberty in girls with Turner syndrome: an open-randomised parallel trial","volume":"167","author":"Labarta","year":"2012","journal-title":"Eur J Endocrinol"},{"key":"2019123012291381100_ref12","doi-asserted-by":"crossref","first-page":"639","DOI":"10.1007\/BF01544272","article-title":"A body image scale for evaluating transsexuals","volume":"4","author":"Lindgren","year":"1975","journal-title":"Arch Sex Behav"},{"key":"2019123012291381100_ref13","doi-asserted-by":"crossref","first-page":"e31","DOI":"10.1542\/peds.110.3.e31","article-title":"Ambiguous genitalia with perineoscrotal hypospadias in 46, XY individuals: long-term medical, surgical, and psychosexual outcome","volume":"110","author":"Migeon","year":"2002","journal-title":"Pediatr"},{"key":"2019123012291381100_ref14","doi-asserted-by":"crossref","first-page":"479","DOI":"10.1203\/00006450-200110000-00010","article-title":"Pubertal development in the Netherlands 1965\u20131997","volume":"50","author":"Mul","year":"2001","journal-title":"Pediatr Res"},{"key":"2019123012291381100_ref15","doi-asserted-by":"crossref","first-page":"1878","DOI":"10.1016\/S0022-5347(05)00934-1","article-title":"Long-term surgical results and patient satisfaction with male pseudohermaphroditism or true hermaphroditism: a cohort of 63 patients","volume":"175","author":"Nihoul-F\u00e9k\u00e9t\u00e9","year":"2006","journal-title":"J Urol"},{"key":"2019123012291381100_ref16","doi-asserted-by":"crossref","first-page":"771","DOI":"10.1515\/JPEM.2008.21.8.771","article-title":"Body image in adolescents with disorders of steroidogenesis","volume":"21","author":"Ning","year":"2008","journal-title":"J Pediatr Endocrinol Metabol"},{"key":"2019123012291381100_ref17","doi-asserted-by":"crossref","first-page":"359","DOI":"10.1111\/j.1365-2265.1982.tb00728.x","article-title":"A comparative study of the effect of oestrogen substitution therapy on breast development in girls with hypo- and hypergonadotropic hypogonadism","volume":"16","author":"Pertzelan","year":"1982","journal-title":"Clin Endocrinol (Oxf)"},{"key":"2019123012291381100_ref18","doi-asserted-by":"crossref","first-page":"52","DOI":"10.1186\/s12902-017-0198-y","article-title":"Participation of adults with disorders\/differences of sex development (DSD) in the clinical study dsd-LIFE: design, methodology, recruitment, data quality and study population","volume":"17","author":"R\u00f6hle","year":"2018","journal-title":"BMC Endocr Disord"},{"key":"2019123012291381100_ref19","doi-asserted-by":"crossref","first-page":"289","DOI":"10.1159\/000358195","article-title":"Safety and efficacy of oxandrolone in growth hormone-treated girls with Turner syndrome: evidence from recent studies and recommendations for use","volume":"81","author":"Sas","year":"2014","journal-title":"Horm Res Paediatr"},{"key":"2019123012291381100_ref20","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1007\/s10508-007-9241-9","article-title":"Psychological distress, self-harming behavior, and suicidal tendencies in adults with disorders of sex development","volume":"38","author":"Sch\u00fctzmann","year":"2009","journal-title":"Arch Sex Behav"},{"key":"2019123012291381100_ref21","doi-asserted-by":"crossref","first-page":"167","DOI":"10.1297\/cpe.24.167","article-title":"Frequencies of spontaneous breast development and spontaneous menarche in Turner syndrome in Japan","volume":"24","author":"Tanaka","year":"2015","journal-title":"Clin Pediatr Endocrinol"},{"key":"2019123012291381100_ref22","doi-asserted-by":"crossref","first-page":"334","DOI":"10.1037\/hea0000600","article-title":"Body image and self-esteem in disorders of sex development: a European multicenter study","volume":"37","author":"van de Grift","year":"2018","journal-title":"Health Psychol"},{"key":"2019123012291381100_ref23","doi-asserted-by":"crossref","first-page":"1778","DOI":"10.1016\/j.jsxm.2016.09.003","article-title":"Body image in transmen: multidimensional measurement and the effects of mastectomy","volume":"13","author":"van de Grift","year":"2016","journal-title":"J Sex Med"},{"key":"2019123012291381100_ref24","doi-asserted-by":"crossref","first-page":"400","DOI":"10.1159\/000333696","article-title":"Adrenarche and puberty in children with classic congenital adrenal hyperplasia due to 21-hydroxylase deficiency","volume":"76","author":"V\u00f6lkl","year":"2011","journal-title":"Horm Res Paediatr"},{"key":"2019123012291381100_ref25","doi-asserted-by":"crossref","first-page":"551","DOI":"10.1017\/S0033291798006667","article-title":"Development of the World Health Organization WHOQOL-BREF quality of life assessment","volume":"28","author":"Whoqol Group","year":"1998","journal-title":"Psychol Med"},{"key":"2019123012291381100_ref26","doi-asserted-by":"crossref","first-page":"184","DOI":"10.1080\/00224499.2012.658586","article-title":"Body image and female sexual functioning and behavior: a review","volume":"49","author":"Woertman","year":"2012","journal-title":"J Sex Res"},{"key":"2019123012291381100_ref27","doi-asserted-by":"crossref","first-page":"10","DOI":"10.1016\/j.ando.2017.10.011","article-title":"Karyotype classification, clinical manifestations and outcome in 124 Turner syndrome patients in China","volume":"80","author":"Wu","year":"2019","journal-title":"Ann d'Endocrinol"}],"container-title":["Human Reproduction"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/academic.oup.com\/humrep\/article-pdf\/34\/12\/2410\/31642682\/dez230.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"http:\/\/academic.oup.com\/humrep\/article-pdf\/34\/12\/2410\/31642682\/dez230.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,12,30]],"date-time":"2019-12-30T12:30:16Z","timestamp":1577709016000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/humrep\/article\/34\/12\/2410\/5644108"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,11,27]]},"references-count":27,"journal-issue":{"issue":"12","published-online":{"date-parts":[[2019,11,27]]},"published-print":{"date-parts":[[2019,12,1]]}},"URL":"https:\/\/doi.org\/10.1093\/humrep\/dez230","relation":{},"ISSN":["0268-1161","1460-2350"],"issn-type":[{"value":"0268-1161","type":"print"},{"value":"1460-2350","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2019,12]]},"published":{"date-parts":[[2019,11,27]]}}}