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.
