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

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.

Keywords: monoclonal gammopathy of undetermined significance (MGUS); online health information; patient education.

Figure 1

Characterization of unique websites. (A) Venn diagram indicating the number of duplicate overlaps between the search engines. Overall, 86 unique websites were identified. (B) Pie chart showing the proportion of websites with and without indicated update date. (C) Inverse Kaplan–Meier curve shows the proportion of website updates by time. Only websites with an indicated update date were included (n = 62). (D) Scatter dot plot shows the score result reached by every single website (n = 84) for each item of the DISCERN score. The categorial item scoring ranges between 1 (not addressed/fulfilled) and 5 (fully addressed/fulfilled). To avoid a visual overlap, the dots were spread around the respective score category. (E) For each of the 50 key fact items, the proportion of websites (n = 86) fully (1), partially (0.5), or not (0) addressing the respective contents is shown. The results are grouped by key fact category.

Figure 2

Characterization of unique videos. (A) The lollipop plot shows the videos ordered by their time since upload until the date of assessment in months. (B) Scatter dot plot shows the score result reached by every single video (n = 61) for each item of the HON Foundation score (0, principle criterium not met; 1, principle criterium met). To avoid a visual overlap the dots were spread around the respective score category. (C) Scatter dot plot shows the score result reached by every single video (n = 61) for each item of the DISCERN score. The categorial item scoring ranges between 1 (not addressed/fulfilled) and 5 (fully addressed/fulfilled). To avoid a visual overlap, the dots were spread around the respective score category. (D) For each of the 50 key fact items, the proportion of videos (n = 61) fully (1), partially (0.5) or not (0) addressing the respective contents is shown. The results are grouped by key fact category.