Abstract: The Supplementary Role of Cancer Information Services:A Comparison of Callers with Prior Information from Doctors vs. the Internet

◆ Doreen Reifegerste, University of Erfurt
◆ Magdalena Rosset, Hanover University of Music, Drama and Media
◆ Fabian Czerwinski, Hanover University of Music, Drama and Media
◆ Eva Baumann, Hanover University of Music, Drama and Media
◆ Andrea Gaisser, Cancer Information Service, German Cancer Research Center
◆ Evelyn Kludt, Cancer Information Service, German Cancer Research Center
◆ Susanne Weg-Remers, Cancer Information Service, German Cancer Research Center

After a cancer diagnosis patients and their relatives often have the need for information and advice to help them cope and make decisions [1]. Consequently, many of them actively seek cancer-related information from various sources, such as physicians and the Internet [2–5]. Physicians provide reliable information, but they often dissatisfy patients and their relatives (e.g. because of time constraints or a lack of psychological support) [6, 7]. In contrast, online cancer information is highly available, but lacks quality control. Thus, information needs of cancer information seekers using either source often remain unfulfilled [8].
Here, Cancer Information Services (CIS) have been established as an easily accessible source for evidence-based information [9], which might supplement other sources. But there is not much research on individual characteristics explaining the differences between those who gather information from other sources before they turn to a CIS. Further, it can be expected that patients and relatives wo turn to a CIS differ regarding their supportive needs depending on the information they have obtained from other sources before [10].
Therefore, the purpose of our study is to compare CIS callers with prior information from a doctor only to callers with prior information from the Internet only regarding the type of caller (patient or relative), their informational needs, the perceived level of prior information, if they used further information sources after their contact with the CIS, as well as sex, age, education, and the patient’s cancer stage.
We analyzed data from two large surveys of callers (in sum n=2,408) who contacted the telephone service of the largest provider of cancer information in Germany in 2011 and in 2016/17, respectively. Callers who agreed to participate, received a questionnaire within two weeks after the contact with the CIS and were asked to state their prior sources of information, level of information prior to the call, and informational needs. Participants who reported only prior information from doctors (n=1,507) are compared to those with only prior online information (n=901).
Results of the logistic regression model (Nagelkerke’s R²=36.5%) indicate that (after controlling for age, sex, and education) people who only talked to a doctor prior to the CIS contact are more likely to be a patient (OR=0.19), during (OR=0.55) or after first treatment (OR=0.64) or with recurrence (OR=0.62). The two groups do not differ in their perceived information level, but in some of their informational needs. People with prior information from a doctor are more likely to seek general explanations (OR=0.66) and decision support (OR=0.67), while people with prior online information are more likely to seek contact information for further support (OR=1.62), and they used further informational sources after their call to the CIS more often (OR=1.82).
Understanding the characteristics and needs of callers with prior information from different sources can help to better fulfill their unique information and support needs and to improve the service of CIS and other cancer-related information providers. This could serve as a basis for the development of communication strategies and tailored information resources for CIS [11].