Impact of Off-Time on Quality of Life in Parkinson’s Patients and Their Caregivers: Insights from Social Media

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.