German-Language Websites Containing Information About Rare Diseases Lack Quality Indicators

Abstract

A Review of:

Pauer, F., Litzkendorf, S., Göbel, J., Storf, H., Zeidler, J., & Graf von der Schulenburg, J.-M. (2017). Rare diseases on the Internet: An assessment of the quality of online information. Journal of Medical Internet Research, 19(1), e23. https://doi.org/10.2196/jmir.7056

Abstract

Objective – To evaluate the quality of the information contained in websites about rare diseases and to determine if quality varies based on the supplier category of the website.

Design – Questionnaire and content analysis.

Setting – Germany

Subjects – 693 German-language websites 

Methods – Websites were identified through a Google search: All 8,000 rare diseases (as listed on Orphanet) and their synonyms were entered into Google; the first 20 results for each disease were scanned for sites written in German. A questionnaire designed to measure the quality of information found on the websites was mailed to each identified website provider. For those who did not respond, the survey was completed by the authors using information from the site. A t test was used to examine differences in the quality of information among the types of information providers.

Main Results – A total of 693 information suppliers were identified. The suppliers completed 17.7% of the surveys; the other 82.3% were completed by the authors. The majority of information providers were patient organizations/support groups (38.8%) followed by medical institutions (26.8%). Information provided by individuals had the lowest quality rating. There were no statistically significant differences between the quality of information supplied by patient support groups and medical institutions. The highest quality rating was provided by associations/sponsoring bodies.

Conclusion – There is not much information available on the Internet regarding rare diseases. Patient support groups and organizations are the largest provider of information. The overall quality rating of information on rare disease websites was found to be low, particularly in areas of accessibility. Website providers should be made aware of how to produce websites of higher quality with greater accessibility.