RESUMO
Social media platforms are used for support and as resources by people from the endometriosis community who are seeking advice about diagnosis, education, and disease management. However, little is known about the scientific accuracy of information circulated on Instagram about the disease. To fill this gap, this study analysed the evidence-based nature of content on Instagram about endometriosis. A total of 515 Instagram posts published between February 2022 and April 2022 were gathered and analysed using a content analysis method, resulting in sixteen main content categories, including "educational", which comprised eleven subcategories. Claims within educational posts were further analysed for their evidence-based accuracy, guided by a process which included fact-checking all claims against the current scientific evidence and research. Of the eleven educational subcategories, only four categories (cure, scientific article, symptoms, and fertility) comprised claims that were at least 50% or greater evidence-based. More commonly, claims comprised varying degrees of evidence-based, mixed, and non-evidence-based information, and some categories, such as surgery, were dominated by non-evidence-based information about the disease. This is concerning as social media can impact real-life decision-making and management for individuals with endometriosis. Therefore, this study suggests that health communicators, clinicians, scientists, educators, and community groups trying to engage with the endometriosis online community need to be aware of social media discourses about endometriosis, while also ensuring that accurate and translatable information is provided.
RESUMO
BACKGROUND: eHealth websites are increasingly being used by community members to obtain information about endometriosis. Additionally, clinicians can use these websites to enhance their understanding of the condition and refer patients to these websites. However, poor-quality information can adversely impact users. Therefore, a critical evaluation is needed to assess and recommend high-quality endometriosis websites. OBJECTIVE: This study aimed to evaluate the quality and provide recommendations for high-quality endometriosis eHealth websites for the community and clinicians. METHODS: PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 guidelines informed 2 Google searches of international and Australian eHealth websites. The first search string used the terms "endometriosis," "adenomyosis," or "pelvic pain," whereas "Australia" was added to the second search string. Only free eHealth websites in English were included. ENLIGHT, a validated tool, was used to assess the quality across 7 domains such as usability, visual design, user engagement, content, therapeutic persuasiveness, therapeutic alliance, and general subjective evaluation. Websites with a total score of 3.5 or more were classified as "good" according to the ENLIGHT scoring system and are recommended as high-quality eHealth websites for information on endometriosis. RESULTS: In total, 117 eHealth websites were screened, and 80 were included in the quality assessment. Four high-quality eHealth websites (ie, those that scored 3.5 or more) were identified (Endometriosis Australia Facebook Page, Endometriosis UK, National Action Plan for Endometriosis on EndoActive, and Adenomyosis by the Medical Republic). These websites provided easily understood, engaging, and accurate information. Adenomyosis by the Medical Republic can be used as a resource in clinical practice. Most eHealth websites scored well, 3.5 or more in the domains of usability (n=76, 95%), visual design (n=64, 80%), and content (n=63, 79%). However, of the 63 websites, only 25 provided references and 26 provided authorship details. Few eHealth websites scored well on user engagement (n=18, 23%), therapeutic persuasiveness (n=2, 3%), and therapeutic alliance (n=22, 28%). In total, 30 (38%) eHealth websites scored well on general subjective evaluation. CONCLUSIONS: Although geographical location can influence the search results, we identified 4 high-quality endometriosis eHealth websites that can be recommended to the endometriosis community and clinicians. To improve quality, eHealth websites must provide evidence-based information with appropriate referencing and authorship. Factors that enhance usability, visual design, user engagement, therapeutic persuasiveness, and therapeutic alliance can lead to the successful and long-term uptake of eHealth websites. User engagement, therapeutic persuasiveness, and therapeutic alliance can be strengthened by sharing lived experiences and personal stories and by cocreating meaningful content for both the community and clinicians. Reach and discoverability can be improved by leveraging search engine optimization tools. TRIAL REGISTRATION: PROSPERO CRD42020185475; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=185475&VersionID=2124365.
