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系统性红斑狼疮患者对生殖健康的看法:探索疾病表现、生活质量及社会支持的作用

Patient Perspectives on Reproductive Health in Systemic Lupus Erythematosus: Exploring Disease Manifestations, Quality of Life, and the Role of Social Support.

作者信息

Alnaimat Fatima, Hamdan Omar, Othman Leen, Dabbah Tala, Marar Maher, Mohammed Reem Hamdy A

机构信息

Division of Rheumatology, Department of Medicine, The University of Jordan, Amman, Jordan.

School of Medicine, The University of Jordan, Amman, Jordan.

出版信息

Int J Womens Health. 2025 Jun 19;17:1849-1862. doi: 10.2147/IJWH.S519395. eCollection 2025.

Abstract

INTRODUCTION/AIM: Systemic Lupus Erythematosus (SLE) is an autoimmune condition that can cause a wide range of clinical symptoms, resulting in a substantial burden on its patients. This study examines how disease symptoms, quality of life, and social support affect SLE patients' reproductive health perspectives.

METHODS

This cross-sectional study included all consecutive female SLE patients at a single-provider rheumatology clinic. Sixty-six patients provided data from September 2023 to March 2024. MSPSS, SLEDAI and WHOQOL-BREF scores were used to test patients perceived social support, disease activity and quality of life, respectively.

RESULTS

The mean age of the study population was 39.62 ± 15.40 years. Constitutional symptoms were the most common disease manifestations (85.8%), followed by mucocutaneous and musculoskeletal symptoms (83.3% each). The mean SLEDAI score was 7.95 ± 9.29. Among previously married patients, 53.0% (n =35) had at least one child, and 81.0% of them experienced at least one pregnancy-related complication. Notably, 69.2% of patients were uncertain about the impact of SLE on fertility, and 91.0% had never received reproductive health counseling. Patients who were consulted by their Obstetrics and Gynecology (OBGYNs) doctors had significantly higher WHOQOL-BREF physical health (32.1 vs 10.3, P-value =0.036) and higher psychological health scores (63.2 vs 35.1, P-value =0.012).

CONCLUSION

SLE profoundly influences patients' physical, psychological, and social well-being, with a notable impact on reproductive health. Collaboration among OBGYNs and Rheumatologists to create a culturally sensitive method to address common misconceptions about SLE and infertility is needed.

摘要

引言/目的:系统性红斑狼疮(SLE)是一种自身免疫性疾病,可引发多种临床症状,给患者带来沉重负担。本研究探讨疾病症状、生活质量和社会支持如何影响SLE患者的生殖健康观念。

方法

这项横断面研究纳入了一家单一医疗机构风湿科诊所的所有连续女性SLE患者。66名患者在2023年9月至2024年3月期间提供了数据。分别使用多维社会支持感知量表(MSPSS)、系统性红斑狼疮疾病活动指数(SLEDAI)和世界卫生组织生活质量简表(WHOQOL-BREF)分数来测试患者感知到的社会支持、疾病活动度和生活质量。

结果

研究人群的平均年龄为39.62±15.40岁。全身症状是最常见的疾病表现(85.8%),其次是皮肤黏膜和肌肉骨骼症状(各占83.3%)。SLEDAI平均分数为7.95±9.29。在已婚患者中,53.0%(n=35)至少有一个孩子,其中81.0%经历过至少一种与妊娠相关的并发症。值得注意的是,69.2%的患者不确定SLE对生育能力的影响,91.0%的患者从未接受过生殖健康咨询。接受妇产科医生咨询的患者在WHOQOL-BREF身体健康方面得分显著更高(32.1对10.3,P值=0.036),心理健康得分也更高(63.2对35.1,P值=0.012)。

结论

SLE对患者的身体、心理和社会幸福感有深远影响,对生殖健康影响显著。妇产科医生和风湿科医生需要合作,制定一种具有文化敏感性的方法,以解决关于SLE和不孕症的常见误解。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/938c/12184680/0e7ddd53cf2e/IJWH-17-1849-g0001.jpg

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