“Better late than never but never late is better”, especially in young women. A multicenter Italian study on diagnostic delay for symptomatic endometriosis

Abstract

Purpose

The aim of the study was to assess the length of diagnostic delay of symptomatic endometriosis in Italy and analyse the presence of correlations between the socio-demographic status of patients and the clinical characteristics/type of diagnosis.

Materials and methods

This multicenter cross-sectional questionnaire-based study was conducted in 10 tertiary Italian referral centres for diagnosis and treatment endometriosis. A total of 689 respondents with histologically proven endometriosis and onset of the disease with pain symptoms completed an on-line self-reported questionnaire written in their own language (World Endometriosis Research Foundation-Endometriosis Phenome and Biobanking Harmonisation Project-Endometriosis Patient Questionnaire–Minimum) evaluating endometriosis related symptoms, family history of endometriosis and chronic pelvic pain, demographic data, as well as medical, reproductive, and obstetric history.

Results

The mean diagnostic delay found was of 11.4 years. The mean time (14.8 years) from symptoms onset to diagnosis was significantly longer among patients aged 9–19 vs patients aged 20–30 (mean 6.9 years, p < 0.001) and patients aged 31–45 (mean 2.9, p < 0.001). No significant association were found between a delayed diagnosis and any of the clinically relevant factors such as the number or severity of the reported symptoms, familiarity, hormonal therapy intake or methodology of diagnosis.

Conclusions

The mean diagnostic delay of endometriosis in Italy is about 11 years. The delay can be up to 4 years longer in patients with pain symptoms onset under 20 years. Educating clinicians and patients on pathologic nature of endometriosis related pelvic pain is advisable to reduce waiting time to diagnosis, especially for young women.

摘要

目的：本研究的目的是评估意大利症状性子宫内膜异位症的诊断延误时间, 并分析患者的社会人口学状况与临床特征/诊断类型之间的相关性。 材料和方法：这项基于问卷的多中心横断面研究是在意大利10个诊断和治疗子宫内膜异位症的三级转诊中心进行的。共有689名经组织学证实为子宫内膜异位症且发病时有疼痛症状的受访者完成了一份在线自我报告问卷(世界子宫内膜异位症研究基金会-子宫内膜异位症表型与生物样本库协调项目-子宫内膜异位症患者调查问卷-最低要求), 评估与子宫内膜异位症相关的症状、子宫内膜异位症和慢性盆腔疼痛的家族史、人口统计数据以及内科、生殖和产科病史。 结果：平均诊断延误时间为11.4年。9∼19岁患者发病至确诊的平均时间(14.8年)明显长于20∼30岁患者(平均6.9年, p<0.001)和31∼45岁患者(平均2.9年, p<0.001)。诊断延误与任何临床相关因素如报告症状的数量或严重程度、熟悉程度、激素治疗摄入量或诊断方法均无显著相关性。 结论：意大利子宫内膜异位症的平均诊断延误时间约为11年。20岁以下出现疼痛症状的患者, 延误时间较平均延误时间可多达4年。对临床医生和患者进行有关子宫内膜异位症相关盆腔疼痛的病理性质的教育是可取的, 特别是对年轻女性来说, 可以减少等待诊断的时间。

Keywords:

• Endometriosis
• diagnostic delay
• diagnosis
• chronic pelvic pain
• adolescent endometriosis

Acknowledgments

We would like to thank AENDO (Associazione Italiana Dolore Pelvico ed Endometriosi) for the support in collecting data.

Disclosure statement

No potential conflict of interest was reported by the author(s).