Patient-Reported Outcome Measure for Real-time Symptom Assessment in Women With Endometriosis: Focus Group Study (Preprint)

Esther van Barneveld, Arianne Lim, Nehalennia van Hanegem, Lisa Vork, Alexandra Herrewegh, Mikal van Poll, Jessica Manders, Frits van Osch, Wilbert Spaans, Gommert A. van Koeveringe, Desiree Vrijens, Joanna W. Kruimel, Marlies Y. Bongers, Carsten Leue
2021 · doi:10.2196/preprints.28782 · W4205118137
preprint OA: closed CC0
Full text JSON View on OpenAlex View at publisher
⚙ AI-generated summary by claude@2026-06, 2026-06-13 ⓘ

This study developed a new digital experience sampling method tool for real-time endometriosis symptom assessment, finding it easy to use but time-consuming, with optimal compliance for a maximum of 7 days.

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

⚙ AI-generated deep summary by claude@2026-06, 2026-06-13 · read from full text ⓘ

This paper describes the development of a real-time patient-reported outcome measure using the experience sampling method (ESM) for women with endometriosis, drawing item content from validated questionnaires and refining it through focus group sessions and multidisciplinary expert meetings. The tool includes momentary questions about endometriosis-related symptoms, general somatic and psychological symptoms, contextual factors, and the use of food and medication, along with a morning questionnaire assessing sleep and sexuality. In a feasibility/usability test over 28 consecutive days in 5 patients with endometriosis-related pain symptoms, momentary assessment compliance averaged 38% (56% during the first 7 days) and the morning questionnaire was completed in 81%. The study’s main limitation is the very small sample size used for the feasibility testing. This paper is centrally about endometriosis — specifically, development and early feasibility testing of an ESM-based digital symptom assessment tool for endometriosis-related pain and associated symptoms.

Read from the paper's body, not the abstract. Not a substitute for reading the paper. No clinical advice. How this works

Abstract

BACKGROUND Symptoms related to endometriosis have a significant impact on the quality of life, and symptoms often recur. The experience sampling method (ESM), a digital questioning method characterized by randomly repeated momentary assessments, has several advantages over traditionally used measurements, including the ability to assess the temporal relationship between variables such as physical, mental, and social factors. OBJECTIVE The aim of this study is to develop an ESM tool for patients with endometriosis to accurately measure symptoms and their course over time, allowing for personalized treatment and adequate monitoring of treatment efficacy in individual patients. METHODS On the basis of international guidelines, items from validated questionnaires were selected through a literature review and during focus groups and multidisciplinary expert meetings. Data analysis was conducted using ATLAS.ti (ATLAS.ti Scientific Software Development GmbH). The feasibility and usability of the newly developed momentary assessment tool were tested for 28 consecutive days in 5 patients with endometriosis-related pain symptoms. RESULTS Momentary assessment items contained questions concerning endometriosis symptoms, general somatic symptoms, psychological symptoms, contextual information, and the use of food and medication. A morning questionnaire on sleep and sexuality was included. In a pilot study, the patients considered the tool easy to use but time consuming. The average compliance rate of momentary assessments was 37.8% (106/280), with the highest completion rate during the first week (39/70, 56%). Therefore, it is advisable to use the ESM for a maximum of 7 days. CONCLUSIONS A new digital tool for endometriosis symptom assessment was developed using the ESM, which may help overcome the limitations of current retrospective questionnaires. After validation and testing, future studies will be planned to evaluate the use of this tool in a clinical setting in order to propose a personalized treatment plan for women with endometriosis. CLINICALTRIAL
Full text 2,221 characters · extracted from oa-doi-fallback · 5 sections · click to expand

Abstract

Background: Symptoms related to endometriosis are correlated with mental health and have a significant impact on quality of life. The Experience Sampling Method (ESM), a digital questioning method characterized by randomly repeated momentary assessments, overcomes the limitations of current retrospective questionnaires by excluding recall bias and taking into account contextual and psychological factors.

Objective

The aim was to develop an ESM tool for endometriosis patients in order to accurately measure symptoms and their course over time enabling to provide personalized treatment and adequate monitoring of treatment efficacy in individual patients.

Methods

Based on international guidelines on the development of Patient Reported Outcome Measures, items from validated questionnaires were selected by literature review, during focus group and multidisciplinary expert meetings. Qualitative data analysis was conducted using ATLAS.ti. The feasibility and usability of the newly developed momentary assessment tool were tested for 28 consecutive days in 5 patients with endometriosis related pain symptoms.

Results

Momentary assessment items contained questions about endometriosis symptoms, general somatic symptoms, psychological symptoms, contextual information and the use of food and medication. A morning questionnaire was included concerning sleep and sexuality. In 5 patients, the average compliance rate of momentary assessments was 38% with the highest completing rate during the first 7 days (56%). The morning questionnaire was completed in 81%.

Conclusions

A new digital tool for endometriosis symptom assessment was developed using ESM. This tool measures real-time symptoms in the context of daily life, is easy to use and may help overcome limitations of current retrospective questionnaires. Clinical Trial: Not applicable. Citation Request queued. Please wait while the file is being generated. It may take some time.

Text is read by the "Ask this paper" AI Q&A widget below. Extraction quality varies by source — PMC NXML preserves structure cleanly, OA-HTML may include some navigation residue, and OA-PDF can have broken hyphenation. The publisher copy (via DOI) is the canonical version.

My notes (saved in your browser only)

⚙ Ask this paper AI returns verbatim quotes from the full text · source: oa-doi-fallback ⓘ

Answers must be backed by verbatim quotes from this paper's full text. Hallucinated quotes are dropped automatically; if no verbatim passage answers the question, we say so. How this works

Condition tags

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 (17)

Source provenance

openalex
last seen: 2026-06-10T17:14:06.276822+00:00
License: CC0 · commercial use OK