Establishing an electronic patient-reported outcome (ePRO) for patients with endometriosis and chronic pelvic pain: A
Elizabeth Randle1,2, Raquel da Luz Dias1, Allana Munro3,4
1Department of Obstetrics & Gynaecology, IWK Health, Halifax, NS, Canada.
Introduction:
Endometriosis and chronic pelvic pain (CPP) are complex conditions that significantly impact quality of life. Few tools systematically capture patient-reported outcomes in this population. This pilot study evaluated patients' experiences and the perceived usability of an electronic Patient-Reported Outcome (ePRO) tool to assess its feasibility in supporting a clinical data registry. Associations between demographic/clinical characteristics and ePRO usability were also explored.
Methods:
This prospective observational study included patients enrolled at a tertiary endometriosis and CPP clinic who completed a REDCap-based ePRO survey remotely. The survey included demographic items and 13 validated instruments assessing pain, psychological distress, sensory processing, and quality of life. Usability was evaluated through an Online Questionnaire-Experiences Survey (OQES), covering accessibility, completion experience, redundancy, and content relevance. Descriptive statistics, t-tests, and Hedges' g were used for analysis; open-ended responses were thematically reviewed.
Results:
Fourteen patients were invited; 11 (78.6%) completed the full ePRO. Most found it easy to access (90.9%) with stable internet (100%). While 63.6% reported some redundancy, none reported discomfort, and 90.9% agreed the survey captured relevant experiences. Participants with higher Central Sensitization Inventory (CSI) and Generalized Anxiety Disorder-7 (GAD-7) scores were more likely to complete all items (P = 0.042 and .047). Those who did not perceive redundancy scored significantly higher on the Pain Catastrophizing Scale (P = .048) and Endometriosis Health Profile-30 (P = .016).
Conclusion:
The ePRO tool showed high feasibility. Patients with higher symptom burden were more likely to find it useful. Future improvements should reduce redundancy and clarify survey instructions.
