Endocrine Abstracts

JOINT638

Introduction: Women with Turner syndrome (TS) face multiple challenges that can impact their quality of life (QoL), including psychological, social, and sexual well-being. While previous research has focused on girls with TS, data on adult women remain sparse and inconsistent. Adulthood introduces new challenges, such as relationships, infertility, and working life, which may markedly influence QoL. This study explores the physical, psychosocial, and sexual well-being of adult women with TS providing insights into their overall QoL.

Methods: Between 2020 and 2024, all women with TS attending the outpatient clinic were invited to complete an electronic questionnaire. Ten age- and geographically matched female controls from the general population were invited per TS participant. The questionnaire covered demographics, socioeconomic status, and health problems, as well as validated instruments assessing quality of life, sexual function, and mental and physical well-being; among them the WHOQoL-Bref, SF-36, the Female Sexual Function Index (FSFI-19), and scales measuring stress, anxiety and depression.

Results: In total, 131 women with TS and 237 controls completed the questionnaire. Among TS women, 91 were currently receiving hormone replacement therapy (HRT), 15 had been treated with HRT until menopause (defined as age ≥45), and 25 were not currently or had never received HRT. The median age was 37 years (IQR: 26–51) for TS women and 42 years (IQR: 30–54) for controls (p < 0. 0001). Partner status differed significantly, with 53. 3% of TS women having a partner vs 79. 5% of controls (p < 0. 0001). Women with TS had significantly lower SF-36 scores across all domains except Bodily Pain, with the lowest in Vitality, Mental Health and Social Functioning (all p < 0. 001). The median SF-36 General Health score was 65 (IQR: 40–80) for TS women vs 75 (IQR: 60–85) for controls (p < 0. 0001). Similarly, TS women scored lower across all WHOQoL-Bref domains, with a median overall QoL score of 62. 5 (IQR: 50–75) vs 75 (IQR: 62. 5–75) in controls (p < 0. 0001). Overall, 65. 0% of TS women reported sexual activity within the past four weeks, compared to 82. 2% of controls (P = 0. 003). Among sexually active TS women, FSFI-defined scores for arousal, orgasm, and pain were significantly lower (all p < 0. 02), indicating sexual dysfunction. No significant differences were found in overall QoL scores between sexually active and inactive TS women.

Conclusion: Women with TS report significantly more physical, psychological, sexual, and social challenges than controls.