Background
Cancer patients and their families consistently express high, broad and often unmet information needs. Little is known though about information needs, topics of interest, preferred information sources and respective expectations in the general public. To render some insight a population-based survey was conducted.
Methods
A representative sample of 1,852 persons from 16 years of age and older and an additional 395 patients and close relatives were interviewed face to face by trained interviewers. Questions presented covered ways of searching for information, topics where more information would be appreciated, preferred information sources, expectations regarding quality and presentation and preference for information and shared decision-making in case of disease.
Results
More than half the respondents overall and 65% of patients want to participate in medical decisions. Preference for being fully informed is 60% overall. Two thirds of the respondents and 100% of patients have sought cancer information before and 40–60% have current needs. Topics of interest in the general public are mainly risk factors, prevention and early detection, among patients treatment and living with cancer but equally prevention issues are of concern. Typical health information seekers are between 30 and 60 years of age, female and with a higher education. Those younger than 30 years have no considerable interest in cancer-related information. Persons with a primary education may need low threshold information. Major information sources besides doctors are the social environment, then the internet, television and brochures. For persons aged younger than 30 years the internet ranks first. Overall only 30% found the information they had received before helpful. Requirements regarding information are detailed explanations, reliable, individually relevant, up-to-date, comprehensible and free of charge. Information in a person to person setting is by far preferred.
Conclusions
The results of this survey can help to devise offers of cancer information, taking into account the needs and preferences of different groups. With a broad range of topics to be covered a common interest across groups is for prevention issues. Doctors and in general person to person settings are preferred. This may support a complementary role of independent counselling services.