Lazzaroni Maria-Grazia, Moschetti Liala, Pedretti Eleonora, Andreoli Laura, Ramazzotto Francesca, Zatti Sonia, Galetti Ilaria, Airò Paolo, Tincani Angela, Franceschini Franco
Rheumatology and Clinical Immunology Unit, ERN ReCONNET Centre, ASST Spedali Civili of Brescia; Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
Department of Obstetrics and Gynecology, ASST Spedali Civili of Brescia, University of Brescia, Brescia, Italy.
J Scleroderma Relat Disord. 2025 Feb 24:23971983251318148. doi: 10.1177/23971983251318148.
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.
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.
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.
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.
在风湿性疾病（RDs）患者中，疾病对女性健康相关生活质量的影响日益重要。系统性硬化症（SSc）主要影响女性，临床表现和严重程度范围广泛，对日常生活的影响各不相同。本研究的目的是通过一份专门的问卷，具体探讨系统性硬化症患者的“女性健康”问题。
与妇产科医生合作编制了一份匿名自填式问卷（仅为意大利语），随后由五名患者代表进行修订和批准。该问卷在门诊风湿性系统性硬化症诊所的定期就诊期间发放给SSc患者。
在2021年4月至2023年3月期间，168名患者同意参与；其中，44.1%在育龄期（<45岁）被诊断为SSc。问卷由44个问题组成，包括5个涵盖不同主题的部分。女性癌症筛查项目的依从率较高（宫颈癌为86.9%，乳腺癌为93.6%），而36.4%的患者妇科随访不规律，主要是疾病表型较严重的患者。只有42.3%的患者同意填写女性性功能指数（FSFI），其中66.2%的患者存在性功能障碍（得分⩽26.55）。性功能较差与包括指端溃疡在内的不同疾病表现相关。超过90%在诊断后表示有怀孕意愿的患者接受了孕前医学咨询，并对所提供的信息感到满意。相比之下，37.8%在育龄期被诊断的患者进行了避孕讨论。计划生育仍是未满足的需求，因为43.6%的患者未达到他们期望的家庭规模，主要是因为担心自己照顾孩子的能力。
新编制的问卷为全面评估系统性硬化症女性患者的经历提供了独特机会。疾病负担对性功能和定期妇科就诊的依从性有负面影响。此外，在育龄期被诊断可能会增加家庭规模缩小的可能性。照顾系统性硬化症女性患者的临床医生应将这些方面纳入常规管理，从而提高患者的健康素养。
