Internet usage of oncology patients, their relatives, and medical staff and their satisfaction with online information received: A descriptive and exploratory study (Preprint)

BACKGROUND Background: Internet is a key source for health-related information, particularly on cancer. It's widely used by patients and relatives, affecting the doctor-patient relationship in various ways. In Switzerland, there's limited research on this usage and health professionals' perspectives. OBJECTIVE Objective: We performed an exploratory study to investigate cancer information needs, internet use by patients and relatives to search for cancer-related information, satisfaction with online information, reasons for patients' online searches, health professionals' opinions about this behavior, their website recommendations, and the types of websites visited by the three groups. METHODS Methods: A cross-sectional design was applied to investigate three groups of participants: cancer patients (n = 60), relatives of cancer patients (n = 48), and health professionals working in oncology (n = 37). We used an online survey—Recherche d’Informations Sur le Cancer (RISC)—adapted specifically for this study to assess the sociodemographic data, the need for cancer-related information, and users’ satisfaction with the online information. Statistical analyses were carried out in a descriptive manner. RESULTS Results: Cancer patients and their relatives reported that they primarily sought information related to diagnosis and prognosis, cancer in general, and treatment and that they use the internet frequently to search for this information. They reported low satisfaction with the information found online (patients: M = 1.96, SD = 0.26; relatives: M = 1.94, SD = 0.39). Health professionals showed higher satisfaction with information found on the internet, but they were generally only moderately satisfied (M = 2.30, SD = 0.64). Patients reported that the main reason behind this behavior was a desire to obtain more detailed information than that given by health professionals (50%, n = 30). Health professionals considered that the main reason prompting cancer patients to search for cancer-related information online was their desire to obtain information on topics not discussed with health professionals (54.1%, n = 20). About half of the health professionals (51.4%, n = 19) reported that they did not recommend certain cancer-related websites to their patients. The main reason was a lack of knowledge about recommendable websites. The categories of websites that patients, relatives, and health professionals visit, on average, are mostly websites intended for the general public (patients 30.42%; relatives 39.63%; health professionals 27.55%). However, concerning specific websites, the Swiss Cancer League site was most visited (patients n = 39; relatives n = 42; health professionals n = 25). CONCLUSIONS Conclusions: These findings show that the online search behavior of patients and their relatives seeking cancer information is common in the French-speaking part of Switzerland. Furthermore, they underline the importance of improving the quality of cancer-related information online and highlight the key role that health professionals can play in this context.