• Curr Med Res Opin · Aug 2021

    Development of a visual, patient-reported tool for assessing the multi-dimensional burden of endometriosis.

    • Sawsan As-Sanie, Marc R Laufer, Stacey A Missmer, Ally Murji, Katy Vincent, Samantha Eichner, Sarah Cross, Ahmed M Soliman, and Frank Tu.
    • Department of Obstetrics and Gynecology, University of Michigan, Ann Arbor, MI, USA.
    • Curr Med Res Opin. 2021 Aug 1; 37 (8): 1443-1449.

    ObjectiveInadequate communication about endometriosis symptom burden between women and healthcare providers is a barrier for optimal treatment. This study describes the development of the EndoWheel, a patient-reported assessment tool that visualizes the multi-dimensional burden of endometriosis to facilitate patient-provider communication.MethodsAssessment questions for the tool were developed using an iterative Delphi consensus process. A consensus phase included additional practitioners and specialists to broaden perspectives and select revised statements. Semi-structured qualitative interviews were conducted with 13 women with endometriosis to assess the scoring and content of the measures.ResultsSymptoms included in the tool were pelvic pain, vaginal bleeding, bowel/bladder symptoms, energy levels, fertility, impact on activities, emotional and sexual well-being, and self-perceived global health. Additional life impact areas included relationships, social and occupational activity, and self-perception. The 13 interviewees completed the tool in approximately 5-6 min (range 4.0-7.5 min). Most participants (92%) perceived that the tool would enable better patient-provider communication, including addressing symptoms and areas of impact not normally discussed during office visits.ConclusionSimilar to visual circular tools used in burden assessment of other chronic diseases, the tool may facilitate improved patient dialogue with providers around endometriosis treatment goals and options.

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