The impact of systemic sclerosis on women's health evaluated with an ad hoc-developed patient-reported questionnaire.

Objective: The impact of disease on women's health-related quality of life has become increasingly important in patients with rheumatic diseases (RDs). Systemic sclerosis (SSc) mostly affects women with a broad spectrum of clinical presentations and severity, and a variable impact on daily living. The objective of the present study was to specifically address "women's health" in systemic sclerosis patients through a dedicated questionnaire.

Methods: An anonymous self-reported questionnaire (only in Italian) was developed in collaboration with obstetricians and gynecologists and subsequently revised and approved by five patient representatives. The questionnaire was administered to SSc patients during scheduled visits in an outpatient Rheumatology SSc Clinic.

Results: Between April 2021 and March 2023, 168 patients accepted to participate; among them, 44.1% had received their SSc diagnosis during reproductive age (<45 years). The questionnaire was composed of 44 questions and included 5 sections encompassing different topics. A high rate of adherence to female cancer screening programs was recorded (86.9% for cervix and 93.6% for breast cancer), while a non-regular gynecological follow-up was observed in 36.4%, mostly in patients with more severe disease phenotype. Only 42.3% accepted to compile the Female Sexual Function Index (FSFI), which indicated a sexual dysfunction (score ⩽ 26.55) in 66.2% of patients. A worse sexual function was shown to be associated with different disease manifestations, including digital ulcers. More than 90% of patients who expressed a desire for pregnancy after diagnosis received medical pre-conception counseling and were satisfied with the information provided. In contrast, discussion about contraception occurred in 37.8% of patients who had been diagnosed during fertile age. Family planning still represents an unmet need, as 43.6% of patients did not achieve their desired family size, mainly due to concerns about their capacity to care for their children.

Conclusion: The newly developed questionnaire provides a unique opportunity to comprehensively assess the experience of women with SSc. Disease burden was shown to negatively impact sexual function and adherence to regular gynecological visits. Furthermore, receiving a diagnosis during reproductive age may increase the likelihood of a reduced family size. Clinicians who take care of women with SSc should implement these domains into routine management, thus improving the health literacy of their patients.