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

https://doi.org/10.1016/j.pec.2018.01.009Get rights and content

Highlights

  • 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.

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.

Introduction

Malignant Mesothelioma (MM) is a malignancy of the pleura, strongly related to exposure to asbestos [1]. In 2013 in the Netherlands alone, a total of 570 new cases of mesothelioma were diagnosed [2]. MM is mostly diagnosed in low-skilled patients with a professional exposure to asbestos, such as ship- and construction workers [3].

Due to the biologically aggressive nature, the diffuse spread and the relatively late stage of disease diagnoses [4], a curative treatment for MM is quite rare. Chemotherapy, surgery and radiation [4] are part of the current treatment possibilities in the Netherlands. In addition, new, experimental therapies such as immunotherapy are being investigated [5]. Currently, there is no international consensus amongst professionals about the optimal treatment for mesothelioma patients [4]. In contrast to for example the United States, a surgical treatment of mesothelioma is not part of the standard treatment in the Netherlands. The decision-making process revolved around the treatment of MM is therefore complicated, making an adequate provision of information and guidance for patients even more necessary.

Patients with MM have access to a variety of resources about their disease and treatment possibilities. With the rise of the worldwide web, a vast amount of information is now digitally accessible [6]. From previous research in other areas, such as oncological diseases, it was concluded that patients are influenced by online information resources during the decision making process [[7], [8], [9]]. Research by McMullan et al. [10] reported that on average, 53% of Americans and 23% of Europeans use the internet for health related purposes. When asked which purposes in particular, the authors found two particular occasions: 1) to determine the need for professional help previous to the clinical encounter and 2) to reassure themselves, or gather more detailed information after the clinical encounter [10].

However, the online available information is generally not regulated or evaluated; therefore, resources vary in quality and through that, in usability [11,12]. Previous research into informational resources in research areas such as heart- and vascular disease [13] and breast cancer [14] have shown that the quality of online information resources is inadequate and insufficient when it comes to domains such as risk description of the treatment and the discussion of alternative treatments [15].

The quality of online informational resources focused on patients with MM in the Dutch context has not been assessed or described as of yet. This study aims to assess and evaluate the content and quality of online information resources for patients with mesothelioma. Insight into the quality of this information can be a jumping board for further improvements in provision of information about the difficult decisions involved in the treatment of mesothelioma patients.

Section snippets

Online search strategy

On the 12th of September 2015 the term ‘mesothelioom’ (the Dutch translation of ‘mesothelioma’) was entered in the Google search engine (www.google.nl).

Inclusion- and exclusion criteria

The inclusion and exclusion process consisted of two phases. The first phase consisted of the inclusion of the first hundred hits of the Google search. These were websites or online documents (PowerPoint, PDF, etc.) only. Videos and other informational resources were excluded. In the second phase, informational resources were excluded if they

Outcome search strategy

The term ‘mesothelioom’ in the Google search engine resulted in over 36,000 hits with Dutch-language informational resources. Within the first 100 hits of the Google search, there were no videos or other multimedia found (see Fig. 1). Four resources could not be opened or were removed. Of the remaining 96 informational resources, 25 were excluded in phase 2; 22 because they could not meet the inclusion criterion of a minimum of 10 lines of text. Twenty-four resources were excluded because they

Discussion

This study indicates that the quality of online informational resources for mesothelioma patients is inadequate, both on the domain of medical content, as well as the usability as an online decision-aid. This means that the generally low-skilled group of MM patients is provided with inaccurate and insufficient online information. One could argue whether this brings us back to a situation in which the patient’s physicians hold the monopoly over the provision of accurate information.

As Diaz et

Conflict of interest

The authors declare that there is no conflict of interest.

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