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

• Published in: Patient education and counseling Vol. 101; no. 6; pp. 1088 - 1094
• Main Authors: Soloukey Tbalvandany, S. (Sadaf), Maat, A. (Alexander) P.W.M., Cornelissen, R. (Robin), Nuyttens, J. (Joost) J.M.E., Takkenberg, J. (Johanna) J.M.
• Format: Journal Article
• Language: English
• Published: Ireland Elsevier B.V 01.06.2018
• Subjects: Benchmarking; Consumer Health Information; Cross-Sectional Studies; Decision Making; Humans; Information Services - standards; Information Storage and Retrieval; Internet; Mesothelioma; Mesothelioma - diagnosis; Mesothelioma - therapy; Netherlands; Nursing; Online information; Patient information; Patients - psychology; Decision-making; Patient information; Mesothelioma; Online information
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2018.01.009

•The decision-making process for Malignant Mesothelioma treatment is complicated.•There is a lack of reliable, updated and complete resources for Dutch mesothelioma patients.•For this small and vulnerable patient group, it is as if they are surfing on unreliable waters.•These results are in line with conclusions from international research considering other diseases.•The criteria as applied should be used for future improvements of online informational resources. 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. 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). 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. 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. 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.