A digital program for daily life management with endometriosis: Pilot study on symptoms and quality of life among participants.

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 combining user research, evidence-based medicine, and clinical expertise. Structured around CBT and the quality-of-life metrics from the EHP score, the program is designed to guide participants over a 3-month and is available in France.

Objective: This cohort study was designed to measure the impact of a digital health program on the symptom and quality of life levels of women with endometriosis.

Methods: Ninety-two participants were included in the pilot study, among a total of 146 program participants who volunteered and assessed for eligibility for this research. They were recruited either free of charge through employer health insurance or via individual direct access. A control group of women with endometriosis who did not follow the program was recruited (n=404) through social media and mailing campaign. Questionnaires assessing quality of life and symptom levels were sent to program participants and controls at baseline and at three months via email. 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). Descriptive statistics and statistical tests (Chi-square, Fisher's exact, Wilcoxon, Mann-Whitney U, Student t-tests) were used to analyze intra- and inter-group differences, with Cohen's D measuring effect size for significant results.

Results: 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 (mean±SD: participants=-0.7±1.6, controls=-0.3±1.3, P=.048, small d), anxiety (participants=-1.1±2.8, controls=0.2±2.5, P<.001, medium d) and depression levels (participants=-0.9±2.5, controls=0.0±3.1, P=.04, small d), neuropathic pain (participants=-1.0±2.7, controls=-0.1±2.6, P=.004, small d), and endobelly (participants=-0.9±2.5, controls=-0.3±2.4, P=.03, small d). Participant 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 (participants=-5.9±21.0, controls=1.0±14.8, P=.03, small d) and the EQ-5D (participants=0.1±0.1, controls=-0.0±0.1, P=.001, medium d). Perceived knowledge of endometriosis was significantly greater at three months among participants than in controls (P<.001).

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.