The Most Impactful Symptom of Endometriosis Questionnaire (MISE-Q): a cognitive interview study

Clinician and researcher feedback was incorporated to improve clarity, usability, and feasibility. The MISE-Q was revised, including changes to symptom wording, and the removal of two symptoms and the addition of one. A free-text option was included to capture additional symptoms due to the condition’s heterogeneity.

Participants praised the MISE-Q’s brevity and clear language.</p> <p>The final instrument offers a comprehensive tool to measure the “most impactful symptom” of endometriosis. While it represents the most rigorously developed option available for this purpose, its use in clinical trials should be preceded by field testing to establish additional measurement properties and assess cultural relevance across populations.</p> <p>This study tested the understandability of a new questionnaire designed to capture the symptom of endometriosis that impacts a person’s life the most.

People with endometriosis valued the questionnaire’s clear language and person-centered approach, though some found it challenging to select just one most impactful symptom because their symptoms often overlap. The revised tool shows promise for use in research and clinical trials but requires further testing to confirm how well it performs across different populations.</p>