Objective

To investigate the medical journey and the quality of life of French endometriosis-affected women, from the onset of the symptoms to the therapeutic management.

Study design

Between January 15th 2020 and February 3rd 2020, a prospective cross-sectional web-based survey was conducted among women diagnosed with endometriosis. The questionnaire included 52 questions distributed in five sections (screening, sociodemographic characteristics, impacts on quality of life, SF36 questionnaire, management of endometriosis and proposals for care improvement).

Results

One thousand five hundred fifty-seven endometriosis-affected women aged of 42±12.8 years answered the questionnaire. On average, 7 years elapsed between the first symptoms (at 23.8 ± 10.2 years) and the diagnosis (31.0 ± 8.9 years). The mean number of symptoms was 4.6 ± 2.3, with 82 % of women experiencing pain scores between 7 and 10/10. Following diagnosis, 66 % women received a medical treatment, mostly hormonal treatments (45 %), with a significant decrease in pain intensity (VAS scores after treatment = 4.9 ± 2.7, p < 0.001). Most women (62 %) had already been operated, among whom 22 % by laparotomy. Finally, patients reported numerous impacts on their daily lives, particularly on the sexual, psychological, and physical fields. The overall mean score of quality of life was 4.3 ± 2.6 /10.

Conclusion

This large prospective web-based survey underlines that the journey of women with endometriosis is long and difficult until diagnosis and efficient treatment. It emphasizes the urgent need to reduce the diagnostic delay and thereby the burden of endometriosis on women's lives. Moreover, the creation of referral multidisciplinary centers appears to be crucial to improve the management of the disease.

中文翻译：

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调查受子宫内膜异位症影响的女性的医疗历程：针对 1,557 名法国女性进行的横断面网络调查 (EndoVie) 的结果

客观的

调查法国子宫内膜异位症女性的医疗历程和生活质量，从症状出现到治疗管理。

学习规划

2020年1月15日至2020年2月3日期间，对诊断患有子宫内膜异位症的女性进行了一项前瞻性横断面网络调查。调查问卷包括 52 个问题，分布在五个部分（筛查、社会人口特征、对生活质量的影响、SF36 调查问卷、子宫内膜异位症的管理和护理改进建议）。

结果

1557 名年龄 42±12.8 岁的子宫内膜异位症女性回答了问卷。首次出现症状（23.8 ± 10.2 岁）和诊断（31.0 ± 8.9 岁）之间平均间隔了 7 年。平均症状数为 4.6 ± 2.3，82% 的女性疼痛评分在 7 至 10/10 之间。诊断后，66% 的女性接受了药物治疗，主要是激素治疗 (45%)，疼痛强度显着降低（治疗后 VAS 评分 = 4.9 ± 2.7，p  < 0.001）。大多数女性 (62%) 已经接受过手术，其中 22% 通过剖腹手术。最后，患者报告了对其日常生活的许多影响，特别是在性、心理和身体领域。生活质量的总体平均得分为 4.3 ± 2.6 /10。

结论

这项大型前瞻性网络调查强调，患有子宫内膜异位症的女性在诊断和有效治疗之前的旅程是漫长而艰难的。它强调迫切需要减少诊断延误，从而减少子宫内膜异位症对妇女生活的负担。此外，建立转诊多学科中心似乎对于改善疾病管理至关重要。