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 J. Cross, Sarah Cross, Ahmed M Soliman, Frank F. Tu, Frank Tu
Current medical research and opinion · 2021 · vol. 37(8) , pp. 1443–1449 · doi:10.1080/03007995.2021.1929896 · PMID:34008451 · W3161818128
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This study describes the development of the EndoWheel, a patient-reported visual tool assessing endometriosis symptoms and life impacts, which 92% of participants felt would improve patient-provider communication.

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Abstract

OBJECTIVE: 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. METHODS: 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. RESULTS: 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 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. CONCLUSION: 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.
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Objective

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.

Methods

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.

Results

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 minutes (range 4.0-7.5 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.

Conclusion

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. - Publication status: - Published - Peer review status: - Peer reviewed Actions Access Document - Files: - - (Preview, Version of record, pdf, 2.0MB, Terms of use) - - Publisher copy: - 10.1080/03007995.2021.1929896 Authors - Publisher: - Taylor and Francis - Journal: - Current Medical Research and Opinion More from this journal - Volume: - 37 - Issue: - 8 - Pages: - 1443-1449 - Publication date: - 2021-06-04 - Acceptance date: - 2021-04-30 - DOI: - EISSN: - 1473-4877 - ISSN: - 0300-7995 - Language: - English - Keywords: - Pubs id: - 1179504 - Local pid: - pubs:1179504 - Deposit date: - 2021-06-03 - ARK identifier: Terms of use - Copyright holder: - As-Sanie et al. - Copyright date: - 2021 - Rights statement: - ©2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4. 0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way If you are the owner of this record, you can report an update to it here: Report update to this record

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Condition tags

mesh:D004715mesh:D017699endometriosis

MeSH descriptors

Endometriosis Endometriosis Endometriosis Laparoscopy Consensus Female Humans Patient Reported Outcome Measures Pelvic Pain Pelvic Pain

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (27)

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