[Survey on information needs of cancer patients and their relatives in Germany]. / Der Informationsbedarf von Patienten mit Krebserkrankungen in Deutschland - eine Befragung von Patienten und Angehörigen.

INTRODUCTION: Cancer patients generally have a great need for disease-related information. They prefer to be informed personally by the attending doctor. Yet, they also use other sources, mostly from medical laypersons or public media. The goal of our survey was to obtain insight into information patients get and their requirements regarding information. METHODS AND PARTICIPANTS: Using a standardized questionnaire, we conducted a survey on 226 patients and 32 relatives, who attended meetings providing information for cancer patients. RESULTS: Patients were generally content or highly content with the information they got. The direct consultation with the doctor is the most important source of information especially for older patients. Information by other patients and self-help groups rank second, followed by internet and online chats, which both are of minor importance for patients older than 60 years. From the patients' point of view, sources of information should be individualized and comprehensive, provided by experts and allowing for questions. Patients prefer one constant person for communication. Remarkably, empathic communication was not rated as important. Age and gender are not associated with these preferences for these characteristics of sources of information. DISCUSSION: Patients' and relatives' desire for an individualized, comprehensive counseling with high expertise provided by one person points to the limits of resources of the health system. The importance of additional information material will rise accordingly. This material should be tailored to the needs of diverse patient groups.