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Attitudes and perceptions of affected women towards endocrine endometriosis therapy: an international survey based on free-word association networks

Title: Attitudes and perceptions of affected women towards endocrine endometriosis therapy: an international survey based on free-word association networks
Authors: Thurnherr, N; Burla, L; Metzler, J M; File, B; Imesch, P
Source: Thurnherr, N; Burla, L; Metzler, J M; File, B; Imesch, P (2024). Attitudes and perceptions of affected women towards endocrine endometriosis therapy: an international survey based on free-word association networks. Human Reproduction, 39(1):83-92.
Publisher Information: Oxford University Press
Publication Year: 2024
Collection: University of Zurich (UZH): ZORA (Zurich Open Repository and Archive
Subject Terms: Clinic for Gynecology; 610 Medicine & health; Obstetrics and Gynecology; Rehabilitation; Reproductive Medicine
Description: STUDY QUESTION What are the attitudes and perceptions towards endocrine endometriosis therapy? SUMMARY ANSWER Among the study population, endocrine endometriosis therapies are associated with negative mental images and emotions and there seems to be a pre-therapeutic information deficit on the part of physicians. WHAT IS KNOWN ALREADY Endocrine therapies, as the current standard of conservative endometriosis treatment, have good efficacy and improve symptoms and quality of life in most patients. Nevertheless, clinical practice repeatedly shows rejection on the part of patients, which may result in reduced compliance and discontinuation of therapy. STUDY DESIGN, SIZE, DURATION Cross-sectional study among endometriosis patients using a multilingual questionnaire distributed via the most popular social media channels between November 2020 and February 2021. A total of 3348 women participated in the study. PARTICIPANTS/MATERIALS, SETTING, METHODS Based on a pilot phase, an international, multilingual online survey was conducted among women affected by endometriosis. The questionnaire included free-word associations and questions about personal medical history, source of information, and demographic data. Mental representations were detected based on modules of the co-occurrence network of associations. MAIN RESULTS AND THE ROLE OF CHANCE Six modules with different dominant emotional labels emerged from the confluence of associations to endocrine endometriosis therapy mentioned by participants. Five modules reflected negative mental associations, with the most frequently mentioned words being ‘side effects’, ‘pain’, ‘ineffective’, ‘depression’, and ‘uncertainty’. Of the 12 most frequently selected emotions, only ‘optimistic’ was positive. Side effects affecting mental health are the most important reason for deciding against endocrine therapy in our survey population. Twenty-seven percent of respondents reported knowing little about endocrine therapies for endometriosis. Social media are the most frequently used ...
Document Type: article in journal/newspaper
File Description: application/pdf
Language: English
ISSN: 0268-1161
Relation: https://www.zora.uzh.ch/id/eprint/256021/1/dead221.pdf; info:pmid/37879845; urn:issn:0268-1161
DOI: 10.1093/humrep/dead221
Availability: https://www.zora.uzh.ch/id/eprint/256021/; https://www.zora.uzh.ch/id/eprint/256021/1/dead221.pdf; https://doi.org/10.1093/humrep/dead221
Rights: info:eu-repo/semantics/openAccess ; Creative Commons: Attribution 4.0 International (CC BY 4.0) ; http://creativecommons.org/licenses/by/4.0/
Accession Number: edsbas.D4F74402
Database: BASE