Gouesbet Solène, Lambert Sarah, Amazouz Hélène, Breton Zélia, Tran Viet-Thi, Missmer Stacey, Kvaskoff Marina
Université Paris-Saclay, UVSQ, Inserm, Gustave Roussy, CESP, Villejuif, France.
Lyv Healthcare, Nantes, France.
Eur J Pain. 2025 Jul;29(6):e70040. doi: 10.1002/ejp.70040.
Endometriosis may manifest through various pain symptoms, such as dysmenorrhea, dyspareunia, dyschezia, dysuria and abdominal pain. While retrospective evaluation of these pain symptoms is less expensive and time-consuming compared to a prospective evaluation, there is potential for recall bias, and the reliability of such data needs to be assessed. We aimed to evaluate the reliability of questions on past endometriosis-related pain.
We conducted a reliability study within ComPaRe-Endometriosis, an ongoing prospective e-cohort including patients with endometriosis. We assessed past endometriosis-related pain over a lifetime using the WERF-EPHect Patient Questionnaire-Standard (EPQ-S). Participants rated the worst intensity of dysmenorrhea, dyspareunia, dyschezia, dysuria and abdominal pain that they experienced at ≤ 15, 16-20, 21-30, 31-40 and > 40 years using a numeric-rating scale (NRS). We asked the same questions about 1 year later and measured the agreement between participant responses by calculating intraclass correlation coefficients (ICC) (continuous NRS level) and weighted kappa coefficients (κ) (pain intensity categories).
A total of 1752 participants completed both surveys. The global reliability was close to the 'good' and 'substantial' thresholds for dysmenorrhea (ICC = 0.74; κ = 0.57) and dyspareunia (ICC = 0.72; κ = 0.57), 'moderate' and close to the 'substantial' threshold for dysuria (ICC = 0.68; κ = 0.59), and 'moderate' for dyschezia (ICC = 0.62; κ = 0.54) and abdominal pain (ICC = 0.58; κ = 0.49).
In this population, questions on worst pain intensity over the life course showed moderate-to-good reliability depending on the type of pain, with higher reliability when pain level was considered as a continuous variable.
While prospective measures are the most robust approach in epidemiological research, longitudinal data with pain recorded since childhood or adolescence are scarce. This study shows that the worst level of pelvic and abdominal pain over the life course are reliably reported by endometriosis patients after a 1-year interval. These findings suggest that retrospective pain assessment may reliably be used to assess trajectories of pain over the life course in order to gain insights into the progression of pain-related conditions such as endometriosis.
子宫内膜异位症可能通过多种疼痛症状表现出来，如痛经、性交痛、排便困难、排尿困难和腹痛。虽然与前瞻性评估相比，对这些疼痛症状进行回顾性评估成本更低且耗时更少，但存在回忆偏倚的可能性，因此需要评估此类数据的可靠性。我们旨在评估关于过去子宫内膜异位症相关疼痛问题的可靠性。
我们在ComPaRe - 子宫内膜异位症研究中进行了一项可靠性研究，这是一项正在进行的前瞻性电子队列研究，纳入了子宫内膜异位症患者。我们使用WERF - EPHect患者问卷标准版（EPQ - S）评估了一生中过去与子宫内膜异位症相关的疼痛。参与者使用数字评分量表（NRS）对他们在≤15岁、16 - 20岁、21 - 30岁、31 - 40岁和>40岁时经历的痛经、性交痛、排便困难、排尿困难和腹痛的最严重程度进行评分。大约1年后，我们再次询问相同的问题，并通过计算组内相关系数（ICC）（连续的NRS水平）和加权kappa系数（κ）（疼痛强度类别）来测量参与者回答之间的一致性。
共有1752名参与者完成了两项调查。痛经（ICC = 0.74；κ = 0.57）和性交痛（ICC = 0.72；κ = 0.57）的总体可靠性接近“良好”和“实质性”阈值，排尿困难的可靠性为“中等”且接近“实质性”阈值（ICC = 0.68；κ = 0.59），排便困难（ICC = 0.62；κ = 0.54）和腹痛（ICC = 0.58；κ = 0.49）的可靠性为“中等”。
在该人群中，关于一生中最严重疼痛强度的问题根据疼痛类型显示出中等至良好的可靠性，当将疼痛水平视为连续变量时可靠性更高。
虽然前瞻性测量是流行病学研究中最可靠的方法，但自童年或青春期以来记录疼痛的纵向数据很少。本研究表明，子宫内膜异位症患者在间隔1年后能够可靠地报告一生中盆腔和腹部疼痛的最严重程度。这些发现表明，回顾性疼痛评估可可靠地用于评估一生中疼痛的轨迹，以便深入了解子宫内膜异位症等疼痛相关疾病的进展情况。
