Patient-tailored symptom tracking in endometriosis: a framework to explore disease variability and burden

Endometriosis is a chronic, estrogen-dependent inflammatory disease characterized by highly individualized, multisystemic symptoms, affecting approximately 10% of females. In this work, we present a long-term prospective study in which 34 participants defined personalized symptom sets and severity scales, tracking them daily for up to 12 months using a custom-developed app. This patient-tailored, high-resolution monitoring revealed substantial heterogeneity in the number of symptoms tracked, with participants tracking a median of 24.5 unique symptoms (interquartile range [19.25, 36.5]). To standardize assessment of system-organ involvement, symptoms were mapped to the MedDRA hierarchy, allowing structured analysis of symptom distribution. Based on these data, we propose a framework for characterizing symptom burden, trajectory, and disease burden, concepts that together capture the variability, systemic nature, and complexity of endometriosis. This personalized approach offers a clearer understanding of the disease experience and lays the groundwork for future tools that may improve communication with healthcare providers and inform more personalized and effective treatment strategies.