Supporting patient activation of their knowledge, skill, and confidence in managing their health may empower patients in times of stress.
Patients with Parkinson disease (PD) or who were post-stroke struggled to maintain routine activities due to lockdown procedures during the COVID-19 pandemic, which had a major negative impact on health, function, and well-being, according to a study presented at the 2020 MDS Virtual Congress, September 12–16, 2020.1
As the US was forced to lockdown for more than 8 weeks during the pandemic, those with PD or who were post-stroke were faced with the fact that their routine medical and rehabilitative care was now restricted to a limited basis. Galit Yogev-Seligmann, PhD, of Tel Aviv Sourasky Medical Center, and colleagues aimed to explore the effects that limited care would have on self-management.
Among a cohort of 198 people (64% men), 43.3% claimed they were feeling more depression and anxiety, 42.6% were feeling more tired, and 41.1% claimed their symptoms worsened throughout the pandemic.
Patients with PD or their caregivers made up 86.3% of the patient population. The mean age of patients in the study was 71.10 years (±8.29) and disease duration was 9.70 years (±8.21). Cessation of rehabilitation treatments were reported by 61.8% of the entire population and 68.7% associated worsening symptoms with cancelled rehabilitation or decreased physical activity.
The 2-part study included 27 multiple-choice questions regarding status and change in status of mobility, mood (depression and anxiety), tiredness, social support, body weight, physical activity, rehabilitative treatments, and disease symptoms. Part 2 consisted of the Patient Activation Measure (PAM), which has 13 statements rated on a Likert scale, with scores divided into 4 levels.
Patients who were categorized as 1 tended to be passive and felt overwhelmed managing their health, whereas 4 represented those who have effectively adopted self-management behaviors. Researchers found that PAM levels were inversely correlated with increased tiredness (r = –0.26, P = .26). Patient activation describes people’s knowledge, skill, and confidence in managing their own health. Yogev-Seligmann and colleagues concluded that “supporting patient activation may empower patients in times of stress.”
There has so far been a limited amount of data on the effects of the pandemic and subsequent lockdown on patients with PD. Data published in July 2020 by the Michael J. Fox Foundation for Parkinson’s Research was among the most first to document the impacts of the pandemic on patients in the PD community.2
The Fox Insight dataset included 51 patients with PD who had a COVID-19 diagnosis. During infection, 55% reported a worsening of present motor symptoms, such as tremor, slowness, or balance issues, and more than half reported a worsening of nonmotor symptoms such as mood issues, gastrointestinal challenges, pain, and fatigue.
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