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

Area of Science:

• Reproductive Medicine
• Chronic Disease Management
• Patient-Reported Outcomes

Background:

• Endometriosis is a chronic, estrogen-dependent inflammatory condition affecting approximately 10% of females.
• Characterized by highly individualized and multisystemic symptoms, leading to diagnostic and therapeutic challenges.
• Current assessment methods may not fully capture the complexity and heterogeneity of the disease experience.

Purpose of the Study:

• To develop and validate a personalized, high-resolution monitoring framework for endometriosis symptoms.
• To characterize the variability in symptom presentation and disease burden using patient-tailored data.
• To lay the groundwork for improved communication and personalized treatment strategies.

Main Methods:

• A long-term prospective study involving 34 participants tracking personalized symptom sets and severity scales daily for up to 12 months.
• Utilized a custom-developed mobile application for high-resolution, patient-tailored monitoring.
• Symptoms were mapped to the Medical Dictionary for Regulatory Activities (MedDRA) hierarchy for standardized analysis.

Main Results:

• Demonstrated substantial heterogeneity in symptom tracking, with a median of 24.5 unique symptoms tracked per participant.
• Enabled structured analysis of symptom distribution across the MedDRA hierarchy.
• Provided data to support a framework for characterizing symptom burden, trajectory, and overall disease burden.

Conclusions:

• A personalized, high-resolution monitoring approach effectively captures the heterogeneity and complexity of endometriosis.
• The proposed framework enhances understanding of the individual disease experience.
• This methodology paves the way for improved patient-provider communication and personalized treatment strategies for endometriosis.