1. Comparing Survivors of Cancer in Population-Based Samples With Those in Online Cancer Communities: Cross-sectional Questionnaire Study (Preprint)
- Author
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Mies C van Eenbergen, Ruben D Vromans, Lidwine W Tick, Gerard Vreugdenhil, Emiel J Krahmer, Floortje Mols, and Lonneke V van de Poll-Franse
- Abstract
BACKGROUND Most Western countries have websites that provide information on cancer and the opportunity to participate in online cancer communities (OCCs). The number of patients with cancer that participate in these OCCs is growing. These patients are relatively easy to approach for research purposes. OBJECTIVE The objective of this study is to determine the differences and similarities between survivors of cancer in population-based samples and survivors participating in OCCs who use the internet in relation to their illness. METHODS In 2017, we drew a sample of 539 population-based patients and 531 OCC patients. The population-based patients were sent a paper-based questionnaire, and the OCC patients were sent the same questionnaire on the web. In the questionnaire, we asked patients about their sociodemographics, internet use, sources of information, media use, and wishes regarding future internet use for health care–related purposes, and the effect of internet use on their health care consumption. RESULTS The response rate of population-based internet users was 47% (233/496), and that of the OCC group was 40.3% (214/531). The OCC group had a significantly higher education level (PPPPPP CONCLUSIONS We conclude that survivors who are members of an OCC are not representative of survivors of cancer in general. There are significant differences in sociodemographic characteristics, internet use during their treatment journey, internet search frequency during their cancer journey, and participation wishes. Using web-based information and communication can support shared decision-making and may facilitate the active participation of patients during their treatment. For research purposes, it is important to take the bias in OCC groups into account.
- Published
- 2020
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