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