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

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

doi:10.3390/cancers13184508

Emma Pauline Kreutzer, Gerlinde Egerer + Show 4 more

Open Access

https://doi.org/10.3390/cancers13184508

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Journal: Cancers	Publication Date: Sep 7, 2021
Citations: 4	License type: CC BY 4.0

Affiliation: Heidelberg University, University Hospital Heidelberg

Abstract

Simple SummaryIn 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 Our study clearly highlights the risk of misinformation by insufficient, incorrect, misleading, and out-of-date information.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.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.

Highlights

Introduction distributed under the terms and Monoclonal gammopathy of undetermined significance (MGUS) is a clonal, premalignant plasma cell or B-cell disorder, characterized by the presence of monoclonal protein and absence of multiple myeloma or lymphocytic/lymphoplasmacytic malignancies [1,2]
The removal of duplicates between the three search engines resulted in 86 unique monoclonal gammopathy of undetermined significance (MGUS)-relevant websites (Table 1)
The current analysis provides an extensive evaluation of MGUS-related online health information

Summary

Introduction

Depending on the subtype of MGUS, there is a considerable risk of progression to multiple myeloma (MM), lymphoplasmacytic malignancy, or other serious disorders, such as light chain amyloidosis of 0.3% to 1% per year [2]. Upon an extensive initial evaluation, indications for follow-up examinations on a regular basis are given in all patients to detect progression. This implicates a constant fear of facing cancer, considerable anxiety, and concerns. Knowing what content is assessable to patients online may help clinicians to educate their patients, actively address misinformation, and reduce their concerns and fears [4]. The quality of online resources available for monoclonal gammopathy of undetermined significance (MGUS) was evaluated.

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Conclusion