WWW mesothelioma information: Surfing on unreliable waters. A cross-sectional study into the content and quality of online informational resources for mesothelioma patients

Our plain-English summary of WWW mesothelioma information: Surfing on unreliable waters. A cross-sectional study into the content and quality of online informational resources for mesothelioma patients, by S.S. Soloukey Tbalvandany, A.A.P.W.M. Maat, R.R. Cornelissen, et al (Patient Education and Counseling, 2018).

The study

• Authors: S.S. Soloukey Tbalvandany, A.A.P.W.M. Maat, R.R. Cornelissen, J.J.J.M.E. Nuyttens, J.J.J.M. Takkenberg
• Journal: Patient Education and Counseling
• Published: 2018;101(6):1088-1094
• Cited by: 3 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

Objective: Malignant Mesothelioma (MM) is a rare asbestos related disease mostly diagnosed in low-skilled patients. The decision-making process for MM treatment is complicated, making an adequate provision of information necessary. The objective of this study is to assess the content and quality of online informational resources available for Dutch MM patients.

Methods: The first 100 hits of a Google search were studied using the JAMA benchmarks, the Modified Information Score (MIS) and the International Patient Decision Aid Standard Scoring (IPDAS).

Results: A total of 37 sources were included. Six of the 37 resources were published by hospitals. On average, the informational resources scored 37 points on the MIS (scale 0-100). The resources from a (bio)medical sources scored the best on this scale. However, on the domain of use of language, these resources scored the worst.

Conclusions: The current level of medical content and quality of online informational resources for patient with MM is below average and cannot be used as decision-aids for patients.

Practice Implications: The criteria used in this article could be used for future improvements of online informational resources for patients, both online, offline and through health education in the care path.

Copyright © 2018 Elsevier B.V. All rights reserved.

In plain English

This cross-sectional study assessed Dutch-language online information for patients with malignant mesothelioma. On 12 September 2015 the authors searched Google (www.google.nl) for 'mesothelioom' and screened the first 100 hits. After exclusions, 37 resources were assessed. Six came from hospitals and three from commercial sources, including insurance and asbestos removal companies. The resources were checked against the JAMA benchmarks, and three medical specialists scored them using a Modified Information Score (MIS, scale 0 to 100) and the IPDAS decision-aid criteria. The resources averaged 36.7 on the MIS. They scored best on disease description and worst on surgical options and symptom control. Of 16 resources showing an update date, four had been updated within the last year. One pointed to an online decision aid that was not mesothelioma-specific. Professional medical guidelines scored best on medical content, but most of the five resources failing the plain-language criterion were guidelines. The authors concluded the information was inadequate in content and as a decision aid. They noted that their scoring system, partly modified by themselves, may be insufficient and that its weights need validation.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Cross-sectional study of online informational resources (websites and online documents)
• Who was studied: The first 100 hits of a Google search (www.google.nl) for the Dutch term 'mesothelioom' on 12 September 2015. Of these, 37 Dutch-language resources were assessed after exclusions.
• Exposure: Not applicable. The study evaluated the content and quality of online patient information about malignant mesothelioma, not asbestos exposure.
• Main results:
  • 37 information resources were assessed on quality and content.
  • Of the 37 resources, six were published by hospitals and three by commercial sources (insurance companies and asbestos removal companies). Table 1 reports 23 from other sources and 5 of unknown source.
  • JAMA benchmarks: 16 of 37 resources displayed a date of update, and only four of those 16 had been updated in the last year.
  • The 37 resources averaged 36.7 points on the MIS (scale 0 to 100).
  • Resources scored worst on Surgical Options (weighted average 2.7 of 25) and Symptom Control (7 of 20). They scored best on Disease Description (18.5 of 30). Treatment Options averaged 8.5 of 25 (Table 3).
  • Online professional medical guidelines scored best on medical content.
  • Five resources did not score on understandable language use, and most of these were professional medical guidelines. Table 4 lists 32 of 37 (86.5%) as using plain language.
  • One resource offered an online decision-aid tool by redirecting to another website. That website featured a general decision aid not specific to mesothelioma.
  • Only one resource (n = 1) displayed stories from a patient's perspective.
• The authors' conclusion: The authors concluded that the quality of online information for mesothelioma patients was inadequate, both in medical content and in usefulness as an online decision aid.
• Limitations the authors state:
  • The scoring system used may be insufficient to assess all aspects of information quality.
  • The scoring systems were partly modified by the authors themselves to fit mesothelioma.
  • Differences between the three reviewers may have biased the results.
  • The weight factors in the Modified Information Score have not been validated.
  • Excluding non-medical sources such as patient reports is worth reconsidering, since patients also look for these online.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Mesothelioma.

Medical terms in this study, explained in our Lexicon: Mesothelioma.

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