High-Quality eHealth Websites for Information on Endometriosis: Systematic Search (Preprint)

Diksha Sirohi, Cecilia Ng, Niranjan Bidargaddi, Helen Slater, Melissa Parker, M. Louise Hull, Rebecca O’Hara
2023 · doi:10.2196/preprints.48243 · W4367049996
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This study evaluated 80 endometriosis eHealth websites using ENLIGHT, identifying four high-quality resources and highlighting the need for improved referencing, authorship, and user engagement on these platforms.

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Abstract

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. CLINICALTRIAL PROSPERO CRD42020185475; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=185475&VersionID=2124365
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Abstract

Background: E-health websites are being increasingly used to obtain information about endometriosis by the community and for self-learning and for recommendations to patients by clinicians. Critical evaluation is needed to inform users of their quality.

Objective

To evaluate the quality of endometriosis e-health websites and provide high-quality recommendations to the community and clinicians.

Methods

PRISMA 2020 guidelines informed two Google searches using incognito mode of international and Australian e-health websites. The first search string used terms ‘endometriosis’, ‘adenomyosis’ or ‘pelvic pain’ whereas ‘Australia’ was added to the second search string. Only free e-health websites in English were included. ENLIGHT, a validated tool, assessed the quality of each e-health website across 7 domains. A final average score of >3.7 was considered high-quality.

Results

Fifty-nine e-health websites were screened and 49 included. Eleven high-quality websites were identified: Endometriosis Australia Facebook Page, Endometriosis UK, National Action Plan for Endometriosis on EndoActive, Endometriosis by Jean Hailes for Women’s Health, Adenomyosis by Jean Hailes for Women’s Health, Endometriosis by IVF Australia, Adenomyosis by Sydney Morning Herald, Endometriosis by National Health System, Endometriosis by Safe Work Australia, Adenomyosis by the Medical Republic, and Endometriosis by Royal Australian College for General Practitioners. These websites provided easily understood, accurate information. The last two e-health websites were resources for clinicians. Recommendations on search engine optimisation are provided to improve reach and discoverability of e-health websites.

Conclusions

Although geographical location can influence the search results, we identified eleven high-quality endometriosis e-health websites that can be recommended to those with endometriosis and clinicians. To improve Google ranking, e-health websites should leverage search engine optimisation tools. Clinical Trial: A systematic review protocol was developed and registered with the international prospective register of systematic reviews (PROSPERO; registration CRD42020185475) after which the systematic review was conducted according to PRISMA guidelines. Citation Request queued. Please wait while the file is being generated. It may take some time. Copyright © The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.

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endometriosisadenomyosis

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