Endocrine drugs represent an important cornerstone of endometriosis therapy. Pharmaceutical alternatives with similar efficacy remain out of sight in the near future. Aim of this study is to investigate attitudes and perceptions concerning endocrine therapies among affected women. An online survey was distributed via social media in Austria, Germany, and Switzerland. Primary endpoints were satisfaction, attitudes and perceptions towards endocrine endometriosis drugs and secondary outcomes differences regarding demographic variables. Of 1420 respondents, 63.5 % (n = 901) described their own attitude towards these drugs as rather negative. The most frequently reported unfavorable associations and experiences were sideeffects in general (85.5 %, n = 1181), change in libido (67.5 %, n = 932), hormone cycle disruptions (65.9 %, n = 910), and inefficiency at alleviating symptoms (38.2 %, n = 527). In total, 66.1 % (n = 935) were not satisfied with endocrine drugs for endometriosis. Age ≤ 30 years, living in a large city, and having an academic degree were significantly correlated to a more negative perception of these drugs and greater dissatisfaction with current endocrine endometriosis drugs. Among women with endometriosis - and particularly among those aged ≤30 years, being large-city residents, or holding an academic degree - there appears to be a relevant degree of rejection and wariness towards endocrine endometriosis drugs. Given the prevalence of endometriosis and the few pharmaceutical alternatives on the horizon, these data point a growing need for further research and development of non-hormonal drugs for the treatment of endometriosis.

Background: Social media platforms, such as Facebook and Instagram, are increasingly being used to share health-related information by “influencers,” regular users, and institutions alike. While patients may benefit in various ways from these interactions, little is known about the types of endometriosis-related information published on social media. As digital opinion leaders influence the perceptions of their followers, physicians need to be aware about ideas and beliefs that are available online, in order to address possible misconceptions and provide optimal patient care. Objective: The aim of this study was to identify and analyze frequent endometriosis-related discussion topics on social media in order to offer caregivers insight into commonly discussed subject matter and aspects. Methods: We performed a systematic search using predefined parameters. Using the term “endometriosis” in Facebook’s search function and a social media search engine, a list of Facebook pages was generated. A list of Instagram accounts was generated using the terms “endometriosis” and “endo” in Instagram’s search function. Pages and accounts in English with 5000 or more followers or likes were included. Nonpublic, unrelated, or inactive pages and accounts were excluded. For each account, the most recent 10 posts were identified and categorized by two independent examiners using qualitative content analysis. User engagement was calculated using the numbers of interactions (ie, shares, likes, and comments) for each post, stratified by the number of followers. Results: A total of 39 Facebook pages and 43 Instagram accounts with approximately 1.4 million followers were identified. Hospitals and medical centers made up 15% (6/39) of the Facebook pages and 5% (2/43) of the Instagram accounts. Top accounts had up to 111,600 (Facebook) and 41,400 (Instagram) followers. A total of 820 posts were analyzed. On Facebook, most posts were categorized as “awareness” (101/390, 25.9% of posts), “education and research” (71/390, 18.2%), and “promotion” (64/390, 16.4%). On Instagram, the top categories were “inspiration and support” (120/430, 27.9% of posts), “awareness” (72/430, 16.7%), and “personal story” (72/430, 16.7%). The frequency of most categories differed significantly between platforms. User engagement was higher on Instagram than on Facebook (3.20% vs 0.97% of followers per post). On Instagram, the highest percentage of users engaged with posts categorized as “humor” (mean 4.19%, SD 4.53%), “personal story” (mean 3.02%, SD 4.95%), and “inspiration and support” (mean 2.83%, SD 3.08%). On Facebook, posts in the categories “awareness” (mean 2.05%, SD 15.56%), “humor” (mean 0.91%, SD 1.07%), and “inspiration and support” (mean 0.56%, SD 1.37%) induced the most user engagement. Posts made by hospitals and medical centers generated higher user engagement than posts by regular accounts on Facebook (mean 1.44%, SD 1.11% vs mean 0.88%, SD 2.71% of followers per post) and Instagram (mean 3.33%, SD 1.21% vs mean 3.19%, SD 2.52% of followers per post). Conclusions: Facebook and Instagram are widely used to share endometriosis-related information among a large number of users. Most posts offer inspiration or support, spread awareness about the disease, or cover personal issues. Followers mostly engage with posts with a humoristic, supportive, and awareness-generating nature. Health care providers should be aware about the topics discussed online, as this may lead to an increased understanding of the needs and demands of digitally proficient patients with endometriosis.

Surgical site infections (SSIs) increase morbidity and mortality rates and generate additional cost for the healthcare system. Pre-operative blood transfusion and the subcutaneous fat thickness (SFT) have been described as risk factors for SSI in other surgical areas. The purpose of this study was to assess the impact of pre-operative blood transfusion and the SFT on the occurrence of SSI in posterior thoracic spine surgery. In total, 244 patients (median age 55 y; 97 female) who underwent posterior thoracic spine fusions from 2008 to 2012 were reviewed retrospectively. Patient-specific characteristics, pre-operative hemoglobin concentration/hematocrit values, the amount of blood transfused, and the occurrence of a post-operative SSI were documented. The SFT was measured on pre-operative computed tomography scans. Surgical site infection was observed in 26 patients (11%). The SFT was 13 mm in patients without SSI and 14 mm in those with infection (p=0.195). The odds ratio for patients with pre-operative blood transfusion to present with SSI was 3.1 (confidence interval [CI] 1.4-7.2) and 2.7 (CI 1.1-6.4) when adjusted for age. There was no difference between the groups with regard to pre-operative hemoglobin concentration (p=0.519) or hematocrit (p=0.908). The SFT did not differ in the two groups. Allogeneic red blood cell transfusion within 48 h prior to surgery was an independent risk factor for SSI after posterior fusion for the fixation of thoracic spine instabilities. Pre-operative blood transfusion tripled the risk, whereas SFT had no influence on the occurrence of SSI.

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.