ESPE Abstracts

Context: Turner syndrome (TS) is associated with short stature, delayed puberty, primary ovarian insufficiency, infertility, and other features. The majority of girls with TS require pubertal induction and life-long oestrogen replacement therapy. There is paucity of data in adult TS on the efficacy of pubertal induction, such as breast satisfaction. Patient-related outcome measures (PROMs) assess the quality of care and treatment from the patient’s perspective. We have employed the BREAST-Q questionnaire, a validated and widely used PROM to assess outcomes of breast surgery, to explore breast satisfaction in Turner women.

Design: International survey on self-reported PROM (Breast-Q) in Turner Women matched to a control dataset.

Methods: We confirmed the suitability of the BREAST-Q pre-augmentation module for the study population through qualitative interviews. An online questionnaire was created, containing the four domains of the BREAST-Q pre-augmentation module, demographics and health history. The survey was online advertised through TS support groups (03-10/2018). Adult Turner women (age 18-45 years) were eligible. BREAST-Q scores were matched to normative data obtained from the Army of Women (AOW), an online community of healthy volunteers from the US.

Results: Eighty-three valid responses were received. 74 out of 97 total responses 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=0.021), ‘Psychosocial Wellbeing’ (P<0.0001) and ‘Sexual Wellbeing’ (P<0.0001). TS who had received oestrogen replacement therapy reported lower scores compared to TS who had not received oestrogen therapy (P<0.0001). Lower BMI and previous growth hormone therapy were associated with lower breast satisfaction. There were no differences in other TS subgroups (age at menarche, BMI, karyotype and age at diagnosis).

Conclusions: 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 should be studied prospectively.