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

Abstract

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.

Impact of COVID-19 Pandemic on (Health) Care Situation of People with Parkinson’s Disease in Germany (Care4PD)

“…Noteworthy, the largest impact resulted from social distancing, especially distancing from families, relatives, and friends and from feeling restricted to home/room—aspects that have been found before [ 14 , 32 ] and that seem to increase stress levels [ 24 , 32 ]. In a previous study, high perceived stress in PwP was associated with lower social support [ 24 ], and COVID-19-related stressors were associated with mental health issues especially in female, highly educated people, people with advanced PD, and those vulnerable to distancing or seeking social support [ 65 ].…”

“…In addition to these suggestions and the general limitations, disruptions of everyday activities and reduced access to health care and therapists might further complicate the situation of people with Parkinson’s disease (PwP) during the COVID-19 pandemic. Global and regional studies from America (US, Canada, Brazil), Asia (China, Japan, South Korea, India, Iran Israel, Turkey), North Africa (Egypt), or European countries (Luxembourg, Netherlands, UK, Italy, Spain, Slovenia) reported wide-ranging consequences of the pandemic on PwP, such as worsened motor and non-motor symptoms [ 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 ], a negative impact on mental health [ 29 ], a decline in quality of life [ 20 , 21 , 30 ], disrupted social and medical activities [ 12 , 13 ], impaired access to PD medication [ 21 , 31 , 32 ], or other unmet needs such as emotional distress, problems with rescheduling appointments with health care providers, and reduction in physical activity [ 2 , 14 , 20 , 22 , 24 , 33 , 34 ]. On the other side, although hours of caregiving at home and caregiver burden increased [ 33 ], patients and caregivers seem to be well informed and to have coped well in some studies [ 35 , 36 , 37 ].…”

Moving Forward from the COVID-19 Pandemic: Needed Changes in Movement Disorders Care and Research

“…In a study with largely US-based respondents ( n = 5249), worsening of motor symptoms was reported by 43% and worsening of non-motor symptoms by 52% [ 7 •]. PD psychiatric symptoms in particular have been noted to worsen with studies identifying increases in impulse control behaviors [ 11 ], worsening of anxiety and depressive symptoms [ 12 ], and a higher prevalence of anxiety and depression [ 13 , 14 ].…”

“…Patient-reported difficulties with deep brain stimulation devices predicted worsened symptoms [ 22 ]. In another study, one-third of those who reported worsening of PD symptoms associated this with loss of rehabilitative care [ 12 ]. However, disruptions in medical care do not provide a full explanation for changes in well-being.…”

“…We must also help patients and caregivers build their armamentarium of self-management tools and skills. This may include developing programs to help patients strengthen coping strategies, manage anticipatory grief [ 62 ], adapt their lifestyles to changes from PD, enhance adherence to medical treatment, and process emotions resulting from living with a chronic disease [ 12 ]. Targeted education for caregivers may improve self-management and self-efficacy, as well [ 55 ].…”