Accuracy and Reliability of Internet Resources for Information on Monoclonal Gammopathy of Undetermined Significance—What Information Is out There for Our Patients?

Kreutzer, Emma Pauline; Sauer, Sandra; Kriegsmann, Mark; Staemmler, Henrike; Egerer, Gerlinde; Kriegsmann, Katharina

SIMPLE SUMMARY: In the current analysis, we provide a comprehensive evaluation of monoclonal gammopathy of undetermined significance (MGUS)-related health information available online. An analysis of general and patient- (user-) focused quality, readability, and content of websites and videos was performed. It revealed a generally medium to low quality of internet resources. Therefore, understandability, informative value, and support in a decision-making process can be attributed to single websites/videos only. Our study clearly highlights the risk of misinformation by insufficient, incorrect, misleading, and out-of-date information. Knowing what content is assessable to patients online may help clinicians to educate their patients and actively address misinformation. ABSTRACT: Background: Online information gathering can increase patients’ engagement in decision-making. The quality of online resources available for monoclonal gammopathy of undetermined significance (MGUS) was evaluated. Methods: 900 websites from Google, Bing, Yahoo, and 150 YouTube videos were assessed. Results: The websites did not differ regarding their search rank or between the search engines. The median time since last update was 24 months. The 86 unique websites showed a medium to poor general quality (JAMA score 3/4, only 8.1% websites with a valid HON certificate). The patient- (user-) focused quality was poor (sum DISCERN score 27/80 points). The reading level was difficult (11th US school grade). The content level was very low (13/50 points). 12.8% of websites contained misleading/wrong facts. Websites provided by scientific/governmental organizations had a higher content level. For the 61 unique videos, the median time since upload was 34 months. The videos showed a medium general quality (HON Foundation score). The patient- (user-) focused quality was poor (sum DISCERN score 24 points). The content level was very low (6 points). Conclusion: MGUS-relevant online sources showed a low quality that was provided on a high reading level. Incorporation of quality indices and regular review of online content is warranted.