The impact of covid-19 on patient disease experience: Insights from social media posts contributed by patients with multiple myeloma

Background: Coronavirus disease 2019 (COVID-19) is rapidly spreading;high infection and mortality rates have resulted in extreme restrictions on individuals' liberties and freedom of movement, which are particularly salient for individuals with pre-existing conditions affecting health related quality of life. Patient-reported information (PRI) shared on social media provides an opportunity to access real-time data to better understand patients' perspectives outside the formal research context. Aims: The aim of this study was to explore the impact of COVID-19 on patients, focusing on analyzing relevant social media posts to better understand the patient experience of multiple myeloma (MM) during the COVID-19 pandemic. Methods: Searches were conducted of two patient advocacy websites (Patient Power, Myeloma Crowd) and YouTube to identify individual social media posts. English-language posts were reviewed if shared by adults with a self-reported MM diagnosis, with content relevant to the impact of COVID-19 on their experiences of MM. A pragmatic literature review was also conducted to identify articles on the impact of COVID-19 on general patient disease experience and use of social media for research during the pandemic. Results: Six social media posts (9 individuals [4 male/5 female]) were identified that met the review criteria (7 individuals provided >1 source of data). Four articles were identified as pertinent to humanistic challenges associated with disease management and use of social media for research during the pandemic. Patients with MM encounter additional challenges associated with the pandemic. The PRI data highlighted exacerbation of the psychosocial impact of MM by the pandemic;patients expressed concern about increased vulnerability to infection due to previous treatment toxicities, plus fear and anxiety regarding possible virus transmission. PRI data reported that patients with MM took additional precautions to limit physical contact while attempting to maintain social interactions;already restricted by MM. Both data sources identified that patients encountered disruption/delays to their medical management and treatments. Although the pandemic has been a catalyst for development of telemedicine strategies to provide efficient management, delays/restrictions on treatments (e.g., transplants for MM) and suspension of development of innovative treatments may have deleterious effects for disease management. However, COVID-19 has also provided positive opportunities. Patients' previous experience of MM treatment-related immunosuppression had provided preparation for dealing with COVID-19. Articles reporting on patients' experiences in general noted that medication adherence during the pandemic has reportedly improved for patients with respiratory conditions. Social media has been utilized as a strategy for patient research during the pandemic, resulting in the formation of research groups-i.e., the COVID-19 Global Rheumatology Alliance-as a way of studying the effects of COVID-19 on patients with rheumatic disease. Summary/Conclusion: PRI can provide timely access to preliminary information on changes to the patient disease experience not easily accessed by traditional research methods. Findings from the targeted search of patients in general and social media posts from patients with MM illustrated that patients with pre-existing diseases encounter challenges due to COVID-19 that can further disrupt their daily lives (e.g., social functioning, medical management) and impact their psychological well-being (e.g., anxiety, fear).