Endocrine 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. Median age was 38 years (range: 18-45 years) and the majority (n=81; 99%) were White Caucasian. Median age at menarche was 15.5 years, and n=72 (88%) received pubertal induction therapy as teenagers. To evaluate BREAST-Q scores compared to controls, we were able to match n=71 Turner women to one control for age, BMI and level of education. We found significantly lower BREAST-Q scores in Turner women for the domains ‘Satisfaction with Breast’ (P=0.021), ‘Psychosocial Wellbeing’ (P<0.0001) and ‘Sexual Wellbeing’ (P < 0.0001), but not for ‘Physical Wellbeing’ (P=0.52); Turner women who had received oestrogen replacement therapy reported lower control-adjusted delta scores for the same domains compared to Turner women who had not received oestrogen therapy (n=63 vs. 8; P < 0.0001). There were no differences in other TS subgroups (age at menarche, BMI, karyotype and age at diagnosis).

Conclusions: We report patient-related outcome measures assessing breast satisfaction in women with TS and observe lower self-reported breast satisfaction in adult Turner women.