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

  • Hannah Eisfeld
  • Fabienne Bauer
  • Clara Dubois
  • Thorsten Schmidt
  • Karin Kastrati
  • Andreas Hochhaus
  • Jutta HübnerEmail author


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.


Patient information needs Satisfaction with information Shared decision-making Patient support groups Patient lectures 



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

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflict of interest.


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Copyright information

© American Association for Cancer Education 2019

Authors and Affiliations

  1. 1.Klinik für Innere Medizin IIUniversitätsklinikum JenaJenaGermany
  2. 2.Krebszentrum Nord, CCCUniversitätsklinikum Schleswig-Holstein, Campus KielKielGermany
  3. 3.Das Lebenshaus e.V. (House of Life)WölfersheimGermany

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