Quality of Online Information on Multiple Myeloma Available for Laypersons

Abstract

Online information can increase patients' competence and engagement. However, there are concerns regarding invalid information. Overall, 300 websites and 50 YouTube videos on multiple myeloma (MM) were evaluated. The websites did not differ between the search engines or search ranks. The median time since the last update was 9 months. The 63 unique websites showed a poor general quality (median JAMA score 2 of 4, only 18% with a valid HON certificate). The patient- (user-) focused quality was medium to poor (median sum DISCERN score 41 out of 80 points). The overall reading level was difficult requiring at least a 12th US school grade. The content level was low (median 24 out of 73 points). Sixteen percent contained misleading/wrong facts. Websites provided by foundation/advocacies showed a significantly higher general and patient- (user-) focused quality. For videos, the median time since upload was 18 months. Judged by the HON foundation score ~80% of videos showed a medium general quality. The patient- (user-) focused quality was medium to poor (median sum DISCERN score 43 points). The content level was very low (median 8 points). MM relevant websites and videos showed a medium to low general, patient- (user-) focused and content quality. Therefore, incorporation of quality indices and regular review is warranted.

Keywords: multiple myeloma; online health information; patient education.

Figure 2

Characterization of websites by category. (A) Inverse Kaplan-Meier curves show the proportion of website updates by time and website category. Only websites with an indicated update date were included (foundation/advocacy n = 19, news/media n = 8, industry/for profit n = 8). The available scientific/governmental website (n = 1) was excluded from the analysis. (B) Unsupervised hierarchical clustering was performed by DISCERN score items (rows) and single websites (columns, n = 63). Item 2. “aims achieved” displays not assessable (NA) scores, as it was only assessable if item 1. “explicit aims” was not scored with 1. The website category is shown in the top row of the heatmap. Websites provided by foundations/advocacies cluster on the left side of the heat map, indicating a higher number of addressed DISCERN score items. (C) Unsupervised hierarchical clustering was performed by key fact score items (rows) and single websites (columns, n = 63). The website category is shown in the top row and the key fact item category is in the last column of the heatmap. Websites provided by foundations/advocacies cluster on the left side of the heat map, indicating a higher number of addressed key facts.

Figure 4

Characterization of videos by category. (A) Unsupervised hierarchical clustering was performed by HON foundation score items (rows) and single videos (columns, n = 45). The video category is shown in the top row of the heatmap. (B) Unsupervised hierarchical clustering was performed by DISCERN score items (rows) and single videos (columns, n = 45). Item 2. “aims achieved” displays not assessable (NA) scores, as it was only assessable if item 1. “explicit aims” was not scored with 1. The video category is shown in the top row of the heatmap. Websites provided by academic institutions cluster on the left side of the heat map, indicating a higher number of addressed DISCERN score items. (C) Unsupervised hierarchical clustering was performed by key fact score items (rows) and single videos (columns, n = 45). The video category is shown in the top row and the key fact item category is in the last column of the heatmap. No obvious clusters of video categories were identified.

Figure 1

Characterization of unique websites. (A) Venn diagram indicating the number of duplicate overlaps between the search engines. Overall 63 unique websites were identified. (B) Pie chart showing the proportion of websites with and without indicated update date. (C) The inverse Kaplan-Meier curve shows the proportion of website updates by time. Only websites with an indicated update date were included (n = 36). (D) A scatter dot plot shows the score result reached by every single website (n = 63) 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 73 key fact items, the proportion of websites (n = 63) fully (1), partially (0.5) or not (0) addressing the respective contents is shown. The results are grouped by key fact category.

Figure 3

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) A scatter dot plot shows the score result reached by every single video (n = 45) 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) A scatter dot plot shows the score result reached by every single video (n = 45) 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 73 key fact items, the proportion of videos (n = 45) fully (1), partially (0.5) or not (0) addressing the respective contents is shown. The results are grouped by key fact category.