Background: 30,000 inquiries/year to the German Cancer Information Service support evidence from studies that cancer patients and their families have strong and frequently unmet needs for information and shared decision making, Population-based findings about these needs have been lacking as basis for tailored offers in Germany.
Aim: To evaluate cancer information needs, preferred resources and interest in active participation among the German population, and assess to what extent these needs are currently met.
Methods: A representative sample of 1852 persons above age 16, and in addition 395 patients and close relatives were asked in personal interviews about their need for information, preferred channels, expectations on quality and communication, and their preferences for information and shared decision making in case of illness.
Results: More than 50% of all respondents and 65% of patients want to take active part in medical decisions. About 60% of all participants want to be fully informed. Two thirds had searched for cancer information before, only 40-60% found the previously obtained information helpful. Those not affected were interested mainly in risk factors and prevention. The typical information seeker is between 30 and 60 years old, female, with higher education; those with lower education level are not actively searching for information and can be reached best with low-threshold information. Preferred information sources are physicians and the social network. Expected quality criteria of information sources: reliable and independent, personally relevant, cutting-edge, in detail, comprehensible, free of charge. One-on-one conversation is the preferred way to obtain information.
Conclusions: The results of this study can contribute to tailoring cancer information better to the target groups' needs and demands. In view of the wide-spread range of topics, the marked interest in prevention is a common denominator across groups. Preference of one-on-one conversation supports a complementary role of independent information- and counseling services.