A survey-based assessment of internet and social media use by oncology patients and their caregivers for health-related education.

Abstract

321 Background: Oncology patients are increasingly utilizing the internet and social media (SM) as sources of health-related information. Contemporary information on oncology patient use patterns for health-related education is not well understood. To address this gap, we surveyed adult oncology patients on active treatment seen in a community-based oncology clinic about their use of the internet and SM around cancer-specific content. Methods: We conducted a qualitative, cross-sectional anonymous survey to understand the range of values, perspectives, and behaviors that patients and caregivers have around their use of internet and SM resources. We also assessed patient beliefs regarding the quality of education provided by their oncologists and how this may relate their patterns of use of these resources. Results: Of the 40 patients surveyed: 55% were male, 64% identified as Caucasian, 22% Latino, 14% were of other races, and 81% spoke English as their primary language. The group represented a diverse age range and education level and a variety of solid and hematologic malignancies. Most participants (89%) reported receiving written educational materials by their oncologist and 58% reported receiving links to electronic/internet resources for disease education.The vast majority of patients (95%) had a positive opinion of in-person education provided by their oncologist and 75% were satisfied with the quality of written or online resources provided. The majority of patients (85%) reported using the internet to learn about their diagnosis and treatment. A smaller proportion (43%) of patients used SM platforms. Of internet information sources used, the patient’s own health system website was the most popular choice (41.7%). Interestingly, 87% found resources without specific guidance from their oncologist. Notably, 11% of patients were instructed by their oncologist to avoid researching their diagnosis online. Conclusions: Our research shows that internet and SM use among patients with cancer is ubiquitous, and independent of the educational interventions provided by their oncologists. Importantly, 66% of participants felt that online research helped them feel more prepared for discussions with their oncologists. A quarter (25%) of patients agreed that they only use online resources recommended by their oncologist’s office, suggesting that the majority of patients will pursue their own research in a self-guided fashion. Encouragingly, the majority of patients (86%) reported that they feel comfortable discussing information they find online with their care provider. Improved understanding in this area will help oncologists better guide their patients to reliable resources and engage more directly in the patient or caregiver’s process of seeking cancer-specific information from outside sources.