Department of Gynecology, University Hospital Zurich, Zurich, Switzerland.
Theoretical Neuroscience and Complex Systems Research Group, Department of Computational Sciences, Wigner Research Centre for Physics, Budapest, Hungary.
Hum Reprod. 2024 Jan 5;39(1):83-92. doi: 10.1093/humrep/dead221.
What are the attitudes and perceptions towards endocrine endometriosis therapy?
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.
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.
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.
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.
The trial is not registered at any trial registry.
人们对内分泌治疗子宫内膜异位症的态度和看法如何？
在研究人群中，内分泌子宫内膜异位症疗法与负面的心理形象和情绪有关，而且医生似乎存在治疗前信息不足的问题。
内分泌治疗作为当前保守性子宫内膜异位症治疗的标准，在大多数患者中具有良好的疗效，并能改善症状和生活质量。然而，临床实践反复表明患者对此类疗法的排斥，这可能导致治疗依从性降低和治疗中断。
研究设计、规模和持续时间：这是一项横断面研究，使用多语言问卷通过 2020 年 11 月至 2021 年 2 月间最受欢迎的社交媒体渠道在子宫内膜异位症患者中进行。共有 3348 名女性参与了这项研究。
参与者/材料、设置、方法：基于试点阶段，针对受子宫内膜异位症影响的女性进行了一项国际性、多语言的在线调查。问卷包括自由词联想和个人病史、信息来源以及人口统计学数据的问题。通过参与者提到的与内分泌子宫内膜异位症疗法相关的联想的共现网络模块检测心理表象。
从参与者提到的内分泌子宫内膜异位症疗法的联想汇聚中出现了六个具有不同主导情感标签的模块。五个模块反映了负面的心理联想，最常提到的词是“副作用”、“疼痛”、“无效”、“抑郁”和“不确定”。在 12 个最常选择的情绪中，只有“乐观”是积极的。在我们的调查人群中，影响心理健康的副作用是决定不选择内分泌治疗的最重要原因。27%的受访者表示对治疗子宫内膜异位症的内分泌疗法知之甚少。社交媒体是最常用的信息来源，被评为最有用的信息来源。
局限性、谨慎的原因：通过翻译问卷，问题可能会因语言不同而有不同的理解。通过使用社交媒体渠道进行分发，目标人群是精通数字技术的患者。调查人群可能不具有代表性，因为对治疗不满意的患者更有可能向同龄人寻求建议。
本研究的结果与最近在三个欧洲国家进行的一项调查结果一致。鉴于子宫内膜异位症的普遍性和新出现的药物替代方案有限，这些数据表明需要进一步研究和开发治疗子宫内膜异位症的非激素药物。大多数子宫内膜异位症患者都很年轻，精通数字技术，并且从社交媒体等替代来源获得了大量信息。在开始治疗前，应认真对待仔细的教育，并由医疗保健提供者单独解决患者的担忧。这有助于减少误解和错误信息，并提高治疗依从性和满意度。
研究资助/利益冲突：无资金或利益冲突声明。
该试验未在任何试验注册处注册。
