Attitudesãnd perceptions ofãffected women towards endocrine endometriosis therapy:ãn international survey based on free-wordãssociation networks

Abstract

STUDY QUESTION: Whatãre theãttitudesãnd perceptions towards endocrine endometriosis therapy? SUMMARY ANSWER: Among the study population, endocrine endometriosis therapiesãreãssociated with negative mental imagesãnd emotionsãnd there seems to beã pre-therapeutic information deficit on the part of physicians. WHAT IS KNOWN ALREADY: Endocrine therapies,ãs the current standard of conservative endometriosis treatment, have good efficacyãnd improve symptomsãnd quality of life in most patients. Nevertheless, clinical practice repeatedly shows rejection on the part of patients, which may result in reduced complianceãnd discontinuation of therapy. STUDY DESIGN, SIZE, DURATION: Cross-sectional studyãmong endometriosis patients usingã multilingual questionnaire distributed via the most popular social media channels between November 2020ãnd February 2021. A total of 3348 women participated in the study. PARTICIPANTS/MATERIALS, SETTING, METHODS: Based onã pilot phase,ãn international, multilingual online survey was conductedãmong womenãffected by endometriosis. The questionnaire included free-wordãssociationsãnd questionsãbout personal medical history, source of information,ãnd demographic data. Mental representations were detected based on modules of the co-occurrence network ofãssociations. MAIN RESULTS AND THE ROLE OF CHANCE: Six modules with different dominant emotional labels emerged from the confluence ofãssociations to endocrine endometriosis therapy mentioned by participants. Five modules reflected negative mentalãssociations, with the most frequently mentioned words being 'side effects', 'pain', 'ineffective', 'depression',ãnd 'uncertainty'. Of the 12 most frequently selected emotions, only 'optimistic' was positive. Side effectsãffecting mental healthãre the most important reason for decidingãgainst endocrine therapy in our survey population. Twenty-seven percent of respondents reported knowing littleãbout endocrine therapies for endometriosis. Social mediaãre the most frequently used sources of informationãnd were ratedãs the most useful. LIMITATIONS, REASONS FOR CAUTION: By translating the questionnaire, questions might have been understood differently depending on the language. By using social media channels for distribution, digitally literate patients were targeted. The survey population might not be representativeãs patients whoãre critical/unhappy with therapyãre more likely to seekãdvice from peer groups. WIDER IMPLICATIONS OF THE FINDINGS: The findings of this study replicate the findings ofã recent survey in three European countries. Given the prevalence of endometriosisãnd the few emerging pharmaceuticalãlternatives, these data point toã growing need for further researchãnd development of non-hormonal drugs for treating endometriosis. Most endometriosis patientsãre youngãnd digitally literate,ãnd much information is obtained fromãlternative sources, suchãs social media. Careful education before starting therapy should be taken seriously,ãnd patients' concerns should beãddressed individually by health care providers. This could help reduce misunderstandingãnd misinformationãnd improve treatmentãdherenceãnd satisfaction. STUDY FUNDING/COMPETING INTEREST(S): There is no funding or conflict of interest to declare. TRIAL REGISTRATION NUMBER: The trial is not registeredãtãny trial registry.