A Digital Program for Daily Life Management With Endometriosis: Pilot Cohort Study on Symptoms and Quality of Life Among Participants (Preprint)

Zélia Breton, Émilie Stern, Mathilde Pinault, Delphine Lhuillery, E. Petit, P. Panel, Maïa Alexaline
2024 · doi:10.2196/preprints.58262 · W4392746032
preprint OA: gold CC0
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⚙ AI-generated summary by gemini-2.5-flash-lite, 2026-06-28 ⓘ

This pilot study found that a 3-month digital health program significantly improved endometriosis symptoms, quality of life, and knowledge compared to a control group.

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⚙ AI-generated deep summary by claude@2026-07, 2026-07-09 · read from full text ⓘ

This pilot case-control study evaluated an online digital program for daily life management in women with endometriosis in France, comparing 92 participants who followed the program with control women with endometriosis recruited based on initial pain level (with questionnaires administered at baseline and three months). The study found that participants reported significantly greater endometriosis knowledge at three months and showed improvements in quality of life (EHP-5 core and EQ-5D) and multiple symptom domains, including global symptom burden and measures related to anxiety, depression, neuropathic pain, and endobelly, with several improvements significantly different from controls. The authors note this was a pilot study and, per the preprint status information, it had not yet undergone peer-reviewed editing, which is a key limitation for interpreting the findings. This paper is centrally about endometriosis — it tests a digital daily-life management program designed to improve knowledge, quality of life, and symptom outcomes in women with endometriosis.

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Abstract

BACKGROUND After experiencing symptoms for an average of 7 years before diagnosis, patients with endometriosis are usually left with more questions than answers about managing their symptoms in the absence of a cure. To help women with endometriosis after their diagnosis, we developed a digital program combining user research, evidence-based medicine, and clinical expertise. Structured around cognitive behavioral therapy and the quality of life metrics from the Endometriosis Health Profile score, the program was designed to guide participants for 3 months. OBJECTIVE This cohort study was designed to measure the impact of a digital health program on the symptoms and quality of life levels of women with endometriosis. METHODS In total, 63% (92/146) of the participants were included in the pilot study, recruited either free of charge through employer health insurance or via individual direct access. A control group of 404 women with endometriosis who did not follow the program, recruited through social media and mailing campaigns, was sampled (n=149, 36.9%) according to initial pain levels to ensure a similar pain profile to participants. Questionnaires assessing quality of life and symptom levels were emailed to both groups at baseline and 3 months. Descriptive statistics and statistical tests were used to analyze intragroup and intergroup differences, with Cohen d measuring effect sizes for significant results. RESULTS Over 3 months, participants showed substantial improvements in global symptom burden, general pain level, anxiety, depression, dysmenorrhea, dysuria, chronic fatigue, neuropathic pain, and endo belly. These improvements were significantly different from the control group for global symptom burden (participants: mean –0.7, SD 1.6; controls: mean –0.3, SD 1.3; P=.048; small effect size), anxiety (participants: mean –1.1, SD 2.8; controls: mean 0.2, SD 2.5; P<.001; medium effect size), depression (participants: mean –0.9, SD 2.5; controls: mean 0.0, SD 3.1; P=.04; small effect size), neuropathic pain (participants: mean –1.0, SD 2.7; controls: mean –0.1, SD 2.6; P=.004; small effect size), and endo belly (participants: mean –0.9, SD 2.5; controls: mean –0.3, SD 2.4; P=.03; small effect size). Participants’ quality of life improved between baseline and 3 months and significantly differed from that of the control group for the core part of the Endometriosis Health Profile-5 (participants: mean –5.9, SD 21.0; controls: mean 1.0, SD 14.8; P=.03; small effect size) and the EQ-5D (participants: mean 0.1, SD 0.1; controls: mean –0.0, SD 0.1; P=.001; medium effect size). Perceived knowledge of endometriosis was significantly greater at 3 months among participants compared to the control group (P<.001). CONCLUSIONS This study’s results suggest that a digital health program providing medical and scientific information about endometriosis and multidisciplinary self-management tools may be useful to reduce global symptom burden, anxiety, depression, neuropathic pain, and endo belly while improving knowledge on endometriosis and quality of life among participants.
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Abstract

Background: After suffering for an average of 7 years before diagnosis, endometriosis patients are usually left with more questions than answers about managing their symptoms in the absence of a cure. To help women with endometriosis after their diagnosis, we developed an online support program available in France.

Objective

This case-control study was designed to measure the impact of a digital health program on the quality of life and symptom levels of women with endometriosis.

Methods

Ninety-two participants were included in the pilot study, among a total of 146 program participants who volunteered for this research. A control group of women with endometriosis who did not follow the program was recruited (n=404). Questionnaires assessing quality of life and symptoms levels were sent to program participants and controls at baseline and at three months. The control group was sampled according to initial pain level in order to obtain a similar pain profile between controls and program participants (n=149).

Results

Perceived knowledge of endometriosis was significantly greater at three months among participants than in controls (P<.001). Participant’s quality of life evolution between baseline and three months improved and significantly differed from the control group for the core part of the EHP-5 (P=.03, small d) and the EQ-5D (P=.001, medium d). Over three months, global symptom burden, the general level of pain, anxiety, depression, dysmenorrhea, dysuria, chronic fatigue, neuropathic pain, and endobelly levels improved significantly among program participants. These improvements were significantly different from the control group for global symptom burden (P=.048, small d), anxiety (P<.001, medium d) and depression levels (P=.04, small d), neuropathic pain (P=.004, small d), and endobelly (P=.03, small d).

Conclusions

The results from this pilot study suggest that a digital health program providing medical and scientific information about endometriosis and multidisciplinary self-management tools may be useful to reduce global symptom burden, anxiety, depression, neuropathic pain, and endobelly while improving knowledge on endometriosis and quality of life among participants. Citation Request queued. Please wait while the file is being generated. It may take some time. Copyright © The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.

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Outcome instruments

EHP-30

Condition tags

endometriosisdysmenorrhea

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.

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