Breast development and satisfaction in women with disorders/differences of sex development
File(s)
Published version
Author(s)
van de Grift, Tim C
Kreukels, Baudewijntje PC
Kohler, Birgit
Cohen-Kettenis, Peggy
de Vries, Annelou
Type
Journal Article
Abstract
STUDY QUESTION
What are the levels of breast development and satisfaction in women with a Disorder/Difference of Sex Development (DSD)?
SUMMARY ANSWER
Compared with normative data, women with DSD reached lower Tanner stages and reported less breast satisfaction.
WHAT IS KNOWN ALREADY
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.
STUDY DESIGN, SIZE, DURATION
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.
PARTICIPANTS/MATERIALS, SETTING, METHODS
A total of 695 female-identifying participants were included (Turner n = 332, 46,XY DSD n = 141 and congenital adrenal hyperplasia n = 222), with a median age of 28 years. 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.
MAIN RESULTS AND THE ROLE OF CHANCE
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 < 0.001, Cohen’s d = 0.45). Breast size and breast satisfaction were associated with feelings of femininity.
LIMITATIONS, REASONS FOR CAUTION
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.
WIDER IMPLICATIONS OF THE FINDINGS
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.
STUDY FUNDING/COMPETING INTEREST(S)
The study was funded by the European Union Seventh Framework Program (FP7/2007–2013) under grant agreement no. 305 373. There are no competing interests.
TRIAL REGISTRATION NUMBER
German Clinical Trials Register: Registration identification number: DRKS00006072.
What are the levels of breast development and satisfaction in women with a Disorder/Difference of Sex Development (DSD)?
SUMMARY ANSWER
Compared with normative data, women with DSD reached lower Tanner stages and reported less breast satisfaction.
WHAT IS KNOWN ALREADY
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.
STUDY DESIGN, SIZE, DURATION
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.
PARTICIPANTS/MATERIALS, SETTING, METHODS
A total of 695 female-identifying participants were included (Turner n = 332, 46,XY DSD n = 141 and congenital adrenal hyperplasia n = 222), with a median age of 28 years. 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.
MAIN RESULTS AND THE ROLE OF CHANCE
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 < 0.001, Cohen’s d = 0.45). Breast size and breast satisfaction were associated with feelings of femininity.
LIMITATIONS, REASONS FOR CAUTION
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.
WIDER IMPLICATIONS OF THE FINDINGS
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.
STUDY FUNDING/COMPETING INTEREST(S)
The study was funded by the European Union Seventh Framework Program (FP7/2007–2013) under grant agreement no. 305 373. There are no competing interests.
TRIAL REGISTRATION NUMBER
German Clinical Trials Register: Registration identification number: DRKS00006072.
Date Issued
2019-12-01
Date Acceptance
2019-11-01
Citation
Human Reproduction, 2019, 34 (12), pp.2410-2417
ISSN
0268-1161
Publisher
Oxford University Press
Start Page
2410
End Page
2417
Journal / Book Title
Human Reproduction
Volume
34
Issue
12
Copyright Statement
© The Author(s) 2019. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
License URL
Subjects
ADULTS
BEHAVIOR
body image
BODY-IMAGE
breast growth
congenital adrenal hyperplasia
DISORDERS
disorders of sex development
GIRLS
INDUCTION
Life Sciences & Biomedicine
Obstetrics & Gynecology
PUBERTY
Reproductive Biology
Science & Technology
sexuality
THERAPY
Turner syndrome
TURNER SYNDROME
Publication Status
Published
Date Publish Online
2019-11-27