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

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 sources of information and were rated as 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 representative as patients who are critical/unhappy with therapy are more likely to seek advice from peer groups.

WIDER IMPLICATIONS OF THE FINDINGS

The findings of this study replicate the findings of a recent survey in three European countries. Given the prevalence of endometriosis and the few emerging pharmaceutical alternatives, these data point to a growing need for further research and development of non-hormonal drugs for treating endometriosis. Most endometriosis patients are young and digitally literate, and much information is obtained from alternative sources, such as social media. Careful education before starting therapy should be taken seriously, and patients' concerns should be addressed individually by health care providers. This could help reduce misunderstanding and misinformation and improve treatment adherence and satisfaction.

STUDY FUNDING/COMPETING INTEREST(S): There is no funding or conflict of interest to declare.

TRIAL REGISTRATION NUMBER

The trial is not registered at any trial registry.