A systematic literature review on patient-reported outcome domains and measures in nonsurgical efficacy trials related to chronic pain associated with endometriosis: an urgent call to action

Daniela C. Rosenberger, Emilia Mennicken, Iris Schmieg, Terkia Medkour, Marie Pechard, Marie Péchard, Juliane Sachau, Fabian Fuchtmann, Judy Birch, Kathrin Schnabel, Katy Vincent, Ralf Baron, Didier Bouhassira, Esther Pogatzki‐Zahn
Pain · 2024 · vol. 165(11) , pp. 2419–2444 · doi:10.1097/j.pain.0000000000003290 · PMID:38968394 · W4400348821
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This systematic review of endometriosis pain trials found high heterogeneity in outcome domains and patient-reported measures, underscoring the need for standardized core outcomes to better capture the bio-psycho-social impact.

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Abstract

ABSTRACT: Endometriosis, a common cause for chronic pelvic pain, significantly affects quality of life, fertility, and overall productivity of those affected. Therapeutic options remain limited, and collating evidence on treatment efficacy is complicated. One reason could be the heterogeneity of assessed outcomes in nonsurgical clinical trials, impeding meaningful result comparisons. This systematic literature review examines outcome domains and patient-reported outcome measures (PROMs) used in clinical trials. Through comprehensive search of Embase, MEDLINE, and CENTRAL up until July 2022, we screened 1286 records, of which 191 were included in our analyses. Methodological quality (GRADE criteria), information about publication, patient population, and intervention were assessed, and domains as well as PROMs were extracted and analyzed. In accordance with IMMPACT domain framework, the domain pain was assessed in almost all studies (98.4%), followed by adverse events (73.8%). By contrast, assessment of physical functioning (29.8%), improvement and satisfaction (14.1%), and emotional functioning (6.8%) occurred less frequently. Studies of a better methodological quality tended to use more different domains. Nevertheless, combinations of more than 2 domains were rare, failing to comprehensively capture the bio-psycho-social aspects of endometriosis-associated pain. The PROMs used showed an even broader heterogeneity across all studies. Our findings underscore the large heterogeneity of assessed domains and PROMs in clinical pain-related endometriosis trials. This highlights the urgent need for a standardized approach to both, assessed domains and high-quality PROMs ideally realized through development and implementation of a core outcome set, encompassing the most pivotal domains and PROMs for both, stakeholders and patients.

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Outcome instruments

EHP-30 VAS-pain NRS-pain Biberoglu-Behrman COS-Endo-2020

Condition tags

mesh:D004715mesh:D017699endometriosischronic_pelvic_pain

MeSH descriptors

Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis

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 (100)

Cited by (3)

Source provenance

europepmc
last seen: 2026-06-04T01:30:01.192114+00:00
openalex
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pubmed
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License: CC0 · commercial use OK