The endometriosis daily diary: qualitative research to explore the patient experience of endometriosis and inform the development of a patient-reported outcome (PRO) for endometriosis-related pain

Yanfen Guan, Allison M Nguyen, Allison Martin Nguyen, Samantha Wratten, Sharan Randhawa, Jessica Weaver, Felipe Arbelaez, Arnaud Fauconnier, Charlotte Panter
Journal of patient-reported outcomes · 2022 · vol. 6(1) , pp. 5 · doi:10.1186/s41687-021-00409-8 · PMID:35032232 · PMC8761214 · W4205899317
article OA: gold CC0 ⤵ 8 in-corpus citations
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⚙ AI-generated summary by claude@2026-06, 2026-06-09 ⓘ

This qualitative study developed and piloted the electronic Endometriosis Daily Diary (EDD) for assessing endometriosis-related pain and its impact, demonstrating good content validity and usability in women experiencing pain.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-10 ⓘ

This qualitative study developed and preliminarily evaluated the Endometriosis Daily Diary (EDD), an electronic patient-reported outcome designed to measure endometriosis-related pain (ERP) severity and related symptom impacts by modifying the validated Dysmenorrhea Daily Diary. Using three stages with US participants who had cyclic and/or non-cyclic ERP (concept elicitation interviews, then two rounds of cognitive debriefing with item comprehension/relevance checks, and finally usability/feasibility pilot testing on handheld devices), the authors found that EDD items were generally relevant and well understood, and that participants could complete the diary daily; the resulting instrument covers cyclic and non-cyclic pelvic pain, dyspareunia, functional/daily life impacts, ERP-associated symptoms, and bowel symptoms. A key limitation is that the paper reports content validity and usability/feasibility, with no psychometric validation performed yet; the next step is formal testing in an ERP sample. This paper is centrally about endometriosis — specifically, it develops the EDD PRO instrument to capture patient experiences of endometriosis-related pain.

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Abstract

PURPOSE: Endometriosis is a chronic disorder of the female reproductive system characterized by debilitating symptoms, particularly endometriosis-related pain (ERP). Patient-reported outcome (PRO) measures of symptoms and impacts are required to assess disease severity in ERP clinical studies and clinical practice. A content-valid instrument was developed by modifying the Dysmenorrhea Daily Diary (DysDD) to form the Endometriosis Daily Diary (EDD), an electronic PRO administered via handheld device. METHODS: Qualitative research with US females with ERP was conducted in three stages: (1) Development of an endometriosis conceptual model based on qualitative literature and conduct of concept elicitation (CE) interviews (N = 30). (2) Cognitive debriefing (CD) interviews (N = 30) conducted across two rounds to assess relevance and understanding of the EDD, with modifications between interview rounds. (3) Pilot testing to assess usability/feasibility of administrating the EDD daily on an electronic handheld device (N = 15). Clinical experts provided guidance throughout the study. RESULTS: The conceptual model provided a comprehensive summary of endometriosis to inform modifications to the DysDD, forming the EDD. CD results demonstrated that EDD items were relevant for most participants. Instructions, items, response scales, and recall period were well-understood. The resulting daily diary assesses severity of cyclic and non-cyclic pelvic pain, dyspareunia, impact of ERP on functioning and daily life, symptoms associated with ERP, and bowel symptoms. Participants were able to complete the diary daily and found the device easy to use. CONCLUSION: The EDD demonstrated good content validity in females experiencing ERP. The next step is to perform psychometric validation in an ERP sample.

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Condition tags

endometriosisdysmenorrheadyspareunia

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