Self- and proxy-reported outcomes after surgery in people with disorders/differences of sex development (DSD) in Europe (dsd-LIFE).

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.

/pdf/breast-development-and-satisfaction-in-women-with-disorders-2t4kdlfpci.pdf

Breast development and satisfaction in women with disorders/differences of sex development.

A possible explanation for spontaneous breast development in xy gonadal dysgenesis

Turner syndrome (TS) is associated with short stature, delayed puberty, primary ovarian insufficiency, and other features. Most girls with TS require oestrogen replacement for pubertal induction. There is paucity of data in adult TS on pubertal outcomes, including breast satisfaction. Here, we assess breast satisfaction in TS with the BREAST-Q questionnaire, a well-validated patient-related outcome measure (PROM).International survey distributed online through TS support groups.Adult women aged 18-45 years with TS (self-reported).The questionnaire contained demographics, health history and the four domains of the BREAST-Q. BREAST-Q scores were matched on a one-to-one basis for age, body mass index (BMI) and educational background to a normative data set derived from the 'Army of Women', an online community of healthy volunteers.Of 97 total responses, 74 could be matched to the control cohort. Median age was 32 years (18-45 years) and 97% were White Caucasian. Median age at menarche was 15.5 years (12-34 years), 86% had received pubertal induction therapy as teenagers. We found significantly lower BREAST-Q scores in TS in the domains 'Satisfaction with Breast' (p = .021), 'Psychosocial Wellbeing' (p < .0001) and 'Sexual Wellbeing' (p < .0001). TS who had received oestrogen replacement therapy reported lower scores compared to TS who had not received oestrogen therapy (p < .0001). Lower BMI and previous growth hormone therapy were associated with lower breast satisfaction.TS women who received oestrogen replacement for pubertal induction self-report lower breast satisfaction scores and late menarche, suggesting that type, mode of delivery, dose and timing of hormone supplements merit prospective study. 

https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/cen.14755

Breast satisfaction in adult women with Turner syndrome—An international survey employing the BREAST‐Q questionnaire

Le syndrome de Turner caracterise par l'absence de la totalite ou d'une partie d'un chromosome X chez une fille, est une affection rare dont la prevalence est estimee actuellement a 1/2500 naissances feminines. Il associe une petite taille et une insuffisance ovarienne avec des anomalies du developpement pubertaire et une infertilite. De facon inconstante, l'apparence physique peut egalement etre modifiee. Face a une condition medicale complexe telle que le syndrome de Turner, notre objectif etait d'evaluer le bien etre physique et psychique des patientes. Ce travail est fonde sur un questionnaire anonyme et a inclus 61 patientes de 15 a 35 ans presentant un syndrome de Turner suivies dans des services d'endocrinologie adulte et pediatrique (Centres Hospitalo-Universitaires de Nice, de Paris Sud et de Marseille). L'evaluation de la qualite de vie, de l'etat psychologique, de l'image corporelle et de la sexualite des patientes a ete comparee a celle de 33 temoins issues du meme environnement social. L'image corporelle et la perception de leur feminite semblent alterees chez les patientes par rapport aux temoins (p < 0.01), ceci de facon correlee avec la qualite de vie et l'etat anxio-depressif. L'entree dans la vie sexuelle est plus tardive et la sexualite nettement inferieure chez les patientes (p < 0.01). Cependant, la qualite de vie generale evaluee par le SF 36 est similaire entre les deux groupes (p=0.5). L'interet porte a la sexualite et la satisfaction qu'elle peut apporter paraissent identiques chez les patientes et les temoins ayant une activite sexuelle (p=0.1 et p=0.8). Par ailleurs, 64% des patientes beneficient d'un suivi gynecologique : 40% declarent avoir eu des informations sur la sexualite et 80% sur les possibilites de procreation medicale assistee. Neanmoins, d'apres ces resultats, une meilleure prise en charge par l'information et l'accompagnement des patientes semble necessaire, afin d'ameliorer leur relation avec elles-memes, leurs interactions avec autrui et leurs attentes en tant que jeunes femmes.

https://dumas.ccsd.cnrs.fr/dumas-01005465/document

Aborder la qualité de vie à travers l'image corporelle et la sexualité dans le syndrome de Turner

Resume Introduction Le syndrome de Turner est defini par l’absence complete ou partielle d’un des chromosomes X, atteignant tout ou partie des cellules de l’organisme. Ces patientes ont un thorax en bouclier avec ecart intermamelonnaire augmente et seins hypotrophiques. But de l’etude Le but de l’etude est d’objectiver les anomalies mammaires chez les turneriennes. Patientes et methodes Il s’agit d’une etude prospective, multicentrique, sur 21 patientes nullipares, de 16 a 35 ans, dont six patientes monosomiques et 14 mosaiques, incluses d’aout 2007 a mars 2008, dont 19 traitees par œstroprogestatifs. Cette etude comportait un examen clinique avec mensurations et photographies. La methodologie statistique a comporte une analyse descriptive, le calcul des correlations lineaires et des tests de Student. Resultats La morphologie mammaire s’est revelee proche de la population generale mais avec des thorax moyens plus epais (en anteroposterieur) et des volumes mammaires moyens plus petits. Nous n’avons pas constate d’anomalie du developpement mammaire specifique. Aucune difference quant a la repartition des hypotrophies, hypertrophies et volumes normaux des seins entre les patientes monosomiques et mosaiques. L’indice d’autosatisfaction sur l’aspect des seins est plutot bas, les patientes se plaignent en majorite d’hypotrophie. Mais ces resultats ne sont pas representatifs de la population de toutes les turneriennes, car il s’agit, ici, de patientes volontaires (risque de biais). Conclusions Contrairement aux idees preconcues, nous n’avons pas mis en evidence d’augmentation de l’ecart intermamelonnaire moyen, en valeur absolue, conformement aux donnees les plus recentes de la litterature qui ne constatent qu’une augmentation apparente de cet ecart par rapport a la largeur thoracique.

Morphologie mammaire dans le syndrome de Turner. Étude clinique prospective multicentrique de 21 cas

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Morphologie mammaire dans le syndrome de Turner. Étude clinique prospective multicentrique de 21 cas