“Where did you read that?” External sources of information and patients perceptions of prognostic goals.
e24166 Background: Patients receiving palliative cancer treatment frequently misperceive likelihood of benefits/toxicity. Physicians fear that external sources of information regarding treatment enhance misperceptions and complicate decision-making. We investigated the sources of external information used, how much it affects patients' misperception and influences their treatment choices. Methods: We prospectively surveyed patients with advanced solid cancers and their oncologists regarding benefits/risks of palliative therapies including likelihood of tumor response and toxicity. Patients reported information-seeking behavior pre-treatment. We compared patients’ perceptions of benefits/risks to that of their oncologists. Results: Across four disease groups, 119 eligible patients enrolled. Their median age was 65 years (range 59–73), 55% were male, and 56% had undergone prior treatment. Treatments included chemotherapy (61%), targeted therapy (15%), and immunotherapy (24%). Over two thirds, 69% of participants stated that they wanted as much as possible information from their oncologist, and nearly all (95%) stated that they felt the amount of information provided by their clinician was “just right.” However, 60% wanted at least a moderate amount of information from external sources, and 58% reported obtaining information from sources other than their oncologist. The most common external sources of information used by participants were printed materials (35%), word of mouth (26%), the American Cancer Society (24%), and WebMD (21%). Nearly one in 3 (31%) of participants felt the information from external sources influenced their decisions more than a small amount. There was no correlation between self-education and misperception of tumor response (coefficient -0.04 p = 0.6) or of treatment toxicity (coefficient 0.05, p = 0.6) relative to their treating physicians’ estimates. Conclusions: While many patients sought information from external sources, most felt they were not substantially influenced by this information. Almost all felt their oncologists provided them with adequate information. Information-seeking behavior was not associated with greater misperception regarding the treatment goals/expectations. Thus, despite a common concern about misinformation in external information sources, oncologists should support patients who seek such sources and discuss their findings.