L26/P-325 Quality of life in women with endometriosis: insights from a large mHealth cohort

Abstract Study question Can mHealth platforms be used to collect real-world health-related quality of life (HRQoL) data and detect population-level differences in women with or without endometriosis? Summary answer Our mHealth platform successfully collected real-world HRQoL data. Women with endometriosis reported significantly poorer disease-specific and general HRQoL, strongly associated with higher central sensitisation scores. What is known already Endometriosis is associated with chronic pelvic pain, functional impairment, and reduced HRQoL. Disease-specific and generic HRQoL instruments are widely used in clinical research, yet large-scale real-world data remain limited. Traditional cohort studies are resource-intensive and often fail to capture longitudinal patient-reported outcomes. mHealth applications provide novel opportunities to collect standardised HRQoL data at scale, enabling digital epidemiology approaches. However, evidence supporting the feasibility of mHealth-based HRQoL assessment in endometriosis populations remains limited. Study design, size, duration This is a prospective digital cohort study conducted within the FEMaLe Horizon 2020 project between May 2021 and December 2024. A preliminary cross-sectional analysis was performed on the first 1,000 app users who completed the questionnaire. Participants/materials, setting, methods The Lucy mHealth app, a menstrual and reproductive health tracking platform, was used for data collection. A questionnaire was designed incorporating validated instruments, including the Visual Analogue Scale (VAS), the Endometriosis Health Profile-5 (EHP-5), the EQ-5D-5L, and the Central Sensitisation Inventory-9 (CSI-9). Participants completed the questionnaire anonymously. The cohort comprised 170 women with a self-reported medical diagnosis of endometriosis and 830 women without endometriosis. Group comparisons, correlation analyses, and chi-square tests were performed. Main results and the role of chance Women with endometriosis reported significantly higher pain intensity on the VAS, including dyspareunia (p = 0.050), dyschezia (p = 0.049), and dysuria (p = 0.014). Based on predefined EHP-5 score categories, 58.8% of women reported a moderate-to-severe disease-specific impact on QoL. Women with endometriosis also reported poorer general health status, reflected by higher EQ-5D-5L total scores (7.86 vs. 7.25 in controls; p = 0.043). CSI-9 category distribution differed significantly between groups (χ² = 6.93, p = 0.031). Among women with endometriosis, 44.7% scored in the high CSI-9 category compared with 34.3% of the controls, while only 10.0% fell into the low category. CSI-9 correlated strongly with EHP-5 (ρ = 0.608, p < 0.001) and EQ-5D-5L (ρ = 0.547, p < 0.001), highlighting the multidimensional biopsychosocial burden of the disease. A strong correlation was also observed between EHP-5 and EQ-5D-5L (ρ = 0.530, p < 0.001), indicating consistent associations across disease-specific and generic HRQoL measures. Limitations, reasons for caution Endometriosis diagnosis was self-reported, and the analysis was cross-sectional. Selection bias inherent to app-based cohorts, as well as the lack of clinical verification, should be considered. Wider implications of the findings mHealth platforms enable scalable, real-world assessment of HRQoL in endometriosis. Digital cohorts may support future epidemiological research, risk stratification, and patient-centred outcome monitoring. Trial registration number Yes