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

OBJECTIVE:<br> Inadequate 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 endome...

Ausführliche Beschreibung

Bibliographische Detailangaben
Hauptverfasser: As-Sanie, S, Laufer, MR, Missmer, SA, Murji, A, Vincent, KF, Eichner, S, Cross, S, Soliman, AM, Tu, F
Format: Journal article
Sprache:English
Veröffentlicht: Taylor and Francis 2021
Beschreibung
Zusammenfassung:OBJECTIVE:<br> Inadequate 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.<br> METHODS:<br> Assessment 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. <br>RESULTS: <br>Symptoms 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&#x2009;minutes (range 4.0-7.5&#x2009;minutes). 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. <br>CONCLUSION: <br>Similar 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.