Introduction. In Parkinson’s disease (PD), the quality of life of both patients and caregivers is affected. While key issues relating to quality of life may not emerge in conversations with healthcare professionals (HCPs), unguarded social media conversations can provide insight into how people with Parkinson’s disease (PwPD) and their caregivers are affected. We conducted a qualitative and quantitative netnographic study of PD conversations posted on social media sites over a 12-month period. Objective. To identify key themes and issues for PwPD. Methods. Using predefined and piloted search terms, we identified 392,962 social media posts (between March 31, 2020, and March 31, 2021, for the UK and France, and between September 30, 2019, and March 31, 2021, for Italy, Spain, and Germany). A random sample of these posts was then analyzed using natural language processing (NLP), and quantitative, qualitative,in-depth contextual analysis was also performed. Results. Key themes that emerged in the PD conversation related to the changing experience of symptoms over time are the physical, emotional, and cognitive impact of symptoms, the management and treatment of PD, disease awareness among the general public, and the caregiver burden. The emotional impact of motor symptoms on PwPD is significant, particularly when symptoms increase and PwPD lose their independence, which may exacerbate existing anxiety and depression. Nonmotor symptoms can also compound the difficulties with managing the physical impact of motor symptoms. The burden of nonmotor symptoms is felt by both PwPD and their caregivers, with the impact of nonmotor symptoms on cognitive processes particularly frustrating for caregivers. The experience of off-time was also featured in the online conversation. Some PwPD believe there is a lack of adequate management from healthcare professionals, who may not appreciate their concerns or take sufficient time to discuss their needs. Conclusion. This study identified key themes that PwPD and their caregivers discuss online. These findings help signpost issues of importance to PwPD and areas in which their care may be improved.
Online discussions have increased during the COVID-19 pandemic as countries around the world established restrictive measures to limit the spread of the virus. Patients and carers have taken to social media to express concerns about challenges to access and disruption of diagnostic and treatment services and seek support and guidance on their prognosis. The goal of this report was to understand the online discourse around COVID-19 for key patient and caregiver audiences, specifically in relation to patients with cancer. Public social media conversations across the US and UK (English only) in relation to COVID-19 and cancer were evaluated to gather this information. Conversations were monitored for 1 week (April 30 to May 6, 2020) and filtered to focus on delays to cancer services. Initial analyses took place across all media channels followed by deep-dive analyses on Twitter and public forums. The online conversation around cancer in relation to COVID-19 is large and multifaceted. Although delays and cancellations to diagnostic services and treatment have undergone intense scrutiny in the media, social media have also seen significant conversation around the real-world implications for cancer patients and their families. The number of COVID-19-related cancer mentions in social media over 1 week was 111.5K. Of these cancer conversations, just over one-third (38K) were related to delays to cancer services. Discussions around delays to cancer services were seen across 10 of the most common cancers. Delays to cancer services are primarily being discussed on Twitter (31.1%) both by those directly affected and those interested in the implications for the health care system. A considerable amount of media reporting also drove the conversation, with online news (24.8%) and blogs (typically news media; 21.9%) highlighting the ongoing concerns about the effect of COVID-19 on future of cancer services and patient prognosis. Forums, typically comprising patients, carers, and others seeking advice and sharing concerns and frustrations around cancer service delays, made up a smaller share of voice (5.5%). There was a pronounced trend towards negative sentiment among conversations in public Facebook pages (49.7%), Twitter (46.3%), and forums (38.4%) regarding cancer service delays. Acute fear, anger, and helplessness were key drivers of negative sentiment in Twitter. Based on analyses of forum-specific conversations, the top COVID-19-related concerns associated with delays in cancer services are delays in cancer diagnostics, access to care (i.e., cancer surgery), and treatment decisions (especially undergoing treatment alone due to social distancing). COVID-19 has led to patients feeling increasing uncertainty about the future. Disruptions to cancer services and lack of clarity as to when these will resume cause patients to feel “abandoned” by their health care providers, frustrated that COVID-19 has overshadowed their battles with cancer, and scared of facing the treatment journey alone. Citation Format: Damian Eade, Laura Galimam, Mónica Fernández-Sierra, Caryn Gordon, Jason McDonough. Public social media discussion of COVID-19 in relation to cancer services disruption [abstract]. In: Proceedings of the AACR Virtual Meeting: COVID-19 and Cancer; 2020 Jul 20-22. Philadelphia (PA): AACR; Clin Cancer Res 2020;26(18_Suppl):Abstract nr PO-035.
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