COVID-19 social distancing: negative effects on people with Parkinson disease and their associations with confidence for self-management

BACKGROUND: The purpose of this study was to describe the effects of COVID-19 social distancing on the function, health, and well-being of people with Parkinson disease (PD), and test the association of these effects with patients’ activation levels, i.e., their skills and confidence in managing their health. METHODS: Community-dwelling individuals with PD answered an anonymous web-based survey. Part 1 included 27 multiple-choice questions regarding changes in function, health, medical care, and well-being. Part 2 consisted of the Patient Activation Measure, which enquired about skills and confidence in managing one’s health. RESULTS: Respondents (N = 142) reported decreases in various function (24.8%–37.3%), health (33.8%–43%), and well-being (26.1%–47.1%) domains. Rehabilitation ceased for 61.2%. Among those reporting a worsening of health, 67.8% associated this with the cessation of rehabilitative treatments or decrease in physical activity. Patients’ activation levels were inversely correlated with increased assistance for activities of daily living, increased tiredness, worsening symptoms, and lack of support from family and friends. CONCLUSIONS: Social distancing had a major negative impact on the health and function of people with PD. PRACTICAL IMPLICATIONS: Supporting people with PD skills and confidence in managing health may preserve their physical and mental health during this period of dramatic changes in life’s circumstances. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12883-021-02313-6.