Leveraging Social Media as a Thermometer to Gauge Patient and Caregiver Concerns: COVID-19 and Prostate Cancer

The COVID-19 pandemic dramatically impacted society and health care on a global scale. To capture the lived experience of patients with prostate cancer and family members/caregivers during the COVID-19 pandemic, we performed a mixed-methods study of posts to two online networks. We compared all 6187 posts to the Inspire Us TOO Prostate Cancer online support and discussion community from December 2019 to April 2020, to 6926 posts from the same interval in 2019, applying a linguistic ethnography method. A similar analysis was performed using data from the Reddit discussion website (246 posts from 2019 and 260 posts from 2020). Manual qualitative analysis was performed for all 207 posts that mentioned COVID, COVID-19, or coronavirus. The computational linguistic ethnography analysis revealed a more collective tone in 2020, with increased concern about death. Our qualitative analysis showed that patients with prostate cancer and caregivers have concern about a variety of COVID-19–related impacts on care, including delays in testing and treatment. There was also substantial concern about the impact of having cancer on COVID-19 risk and access to COVID-19 care. Misinformation was present in 7% of COVID-19–related posts. In conclusion, online networks provide a useful source of real-world data from patients and their families, and analysis of these data highlighted a substantial impact of COVID-19 on prostate cancer care. PATIENT SUMMARY: We performed a study of online posts by patients with prostate cancer and their families on their perspectives about COVID-19. Concerns about the impact of COVID-19 included worry about delays in testing and treatment. Our research also revealed misinformation in COVID-19–related posts.