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Importance of and Satisfaction with Information about Their Disease in Cancer Patients

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Abstract

To learn more about information needs and satisfaction with provided information among cancer patients and whether dissatisfaction with information has any association with how therapy decisions are made. An online survey was conducted during March 2015 and January 2016 by the German non-profit patient organization “Das Lebenshaus e.V.” among their members with rare solid tumors. A total of 338 records was analyzed. The majority found information on their disease important and was satisfied with the provided information. The participants were less satisfied with the information concerning management of side effects than with other aspects of information (p < .001). Support groups, lectures, and the oncologist were rated as the most helpful sources of information followed by a second opinion and media. Participants who were dissatisfied with the information more often made the decision on the treatment alone by themselves (p < .001). Our results show a high satisfaction with disease-related information among our study participants. Improvements could be made by offering more information on the management of side effects and by giving more information about support groups, reliable websites, and other helpful media.

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Acknowledgements

We thank the cancer support organization “Das Lebenshaus e.V.” and all their members and participants for supporting this study.

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Authors and Affiliations

  1. Klinik für Innere Medizin II, Universitätsklinikum Jena, Am Klinikum 1, 07747, Jena, Germany

    Hannah Eisfeld, Fabienne Bauer, Clara Dubois, Andreas Hochhaus & Jutta Hübner

  2. Krebszentrum Nord, CCC, Universitätsklinikum Schleswig-Holstein, Campus Kiel, Arnold-Heller-Straße 3, Haus 14, 24105, Kiel, Germany

    Thorsten Schmidt

  3. Das Lebenshaus e.V. (House of Life), Untergasse 36, 61200, Wölfersheim, Germany

    Karin Kastrati

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  1. Hannah Eisfeld
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Correspondence to Jutta Hübner.

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Eisfeld, H., Bauer, F., Dubois, C. et al. Importance of and Satisfaction with Information about Their Disease in Cancer Patients. J Canc Educ 35, 403–411 (2020). https://doi.org/10.1007/s13187-019-1480-7

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