Retrospective Assessment of Endometriosis Pain Over the Life Course: A Reliability Study Within the ComPaRe ‐Endometriosis Cohort

Solène Gouesbet, Sarah Lambert, Hélène Amazouz, Zélia Breton, Viet-Thi Tran, Viet‐Thi Tran, Stacey A. Missmer, Stacey Missmer, Marina Kvaskoff
European journal of pain (London, England) · 2025 · vol. 29(6) , pp. e70040 · doi:10.1002/ejp.70040 · PMID:40356476 · W4410312187
review OA: hybrid CC0 ⤵ 3 in-corpus citations
🔓 Open OA copy View on OpenAlex View on PubMed View at publisher
⚙ AI-generated summary by claude@2026-06, 2026-06-09 ⓘ

This study found that retrospective assessment of worst endometriosis-related pain over a lifetime showed moderate-to-good reliability over a one-year interval, particularly when pain was measured continuously.

One-sentence paraphrase of the abstract; not a substitute for reading it. No clinical advice. How this works

Abstract

ABSTRACT Background 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. Methods 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 w ) (pain intensity categories). Results 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 w = 0.57) and dyspareunia (ICC = 0.72; κ w = 0.57), ‘moderate’ and close to the ‘substantial’ threshold for dysuria (ICC = 0.68; κ w = 0.59), and ‘moderate’ for dyschezia (ICC = 0.62; κ w = 0.54) and abdominal pain (ICC = 0.58; κ w = 0.49). Conclusions 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. Significance Statement 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.

My notes (saved in your browser only)

Outcome instruments

NRS-pain

Condition tags

mesh:D004412mesh:D004414mesh:D004715mesh:D017699endometriosisdysmenorrheadyspareunia

MeSH descriptors

Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain Abdominal Pain

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (41)

Cited by (3)

Source provenance

europepmc
last seen: 2026-06-04T01:30:01.192114+00:00
openalex
last seen: 2026-06-04T00:00:01.174412+00:00
pmc
last seen: 2026-05-13T20:22:03.195721+00:00
pubmed
last seen: 2026-06-04T00:31:34.272086+00:00
License: CC0 · commercial use OK