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Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0001-6011-6740
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0001-7486-4678
2018 (English)In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, article id e12937Article in journal (Refereed) Published
Abstract [en]

Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information avail‐able to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the docu‐ments were misleading in part. Furthermore, the descriptions provided almost no in‐formation about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple meas‐ures like readability testing can be useful as an indicator of text quality.

Place, publisher, year, edition, pages
2018. Vol. 27, no 6, article id e12937
Keywords [en]
cancer, comprehension, ethics, informed consent, Internet, phase I clinical trial
National Category
Medical Ethics Cancer and Oncology
Research subject
Ethics
Identifiers
URN: urn:nbn:se:uu:diva-362557DOI: 10.1111/ecc.12937ISI: 000451570300032PubMedID: 30277632OAI: oai:DiVA.org:uu-362557DiVA, id: diva2:1253866
Available from: 2018-10-07 Created: 2018-10-07 Last updated: 2019-01-24Bibliographically approved

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Godskesen, ToveFernow, Josepine

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