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G. Yogev-Seligmann1, M. Kafri2
1University of Haifa, Occupational Therapy, Haifa, Israel, 2University of Haifa, Physical Therapy, Haifa, Israel
Background: Background: People with chronic disease like Parkinson's disease rely on routine medical and rehabilitative care to maintain their daily function and health. These facets of care are important parts of self-management. However, this was challenged by more than 8 weeks of lockdown, which limited participation in regular routines.
Within the concept of self-management, "patient activation" describes people’s knowledge, skill, and confidence in managing their own health. It is often used as a measure of self-confidence and ability to effectively self-manage.
Within the concept of self-management, "patient activation" describes people’s knowledge, skill, and confidence in managing their own health. It is often used as a measure of self-confidence and ability to effectively self-manage.
Purpose: To describe health and well-being consequences of the COVID-19 lockdown in people with Parkinson's disease (PD) or post-stroke and to test associations between patient activation and these consequences.
Methods: People with PD or post-stroke living in the community were invited to answer an anonymous survey through social media and patient associations. Part 1 included 27 multiple-choice questions regarding status and change in status of mobility, mood (depression, anxiety), tiredness, social support, body weight, physical activity, rehabilitative treatments and disease symptoms. Part 2 consisted of the Patient Activation Measure (PAM®, Insignia Health), which has 13 statements rated on a Likert scale according to agreement. Scores are divided into 4 levels, where 1 represents patients who tend to be passive and feel overwhelmed managing their own health ("my doctor is in charge of my health"), and 4 represents patients who have effectively adopted self-management behaviors ("I'm my own advocate").
Results: Results: 198 people (64% men) replied. Among them, 171 (86.3%) were people with PD or caregivers, 27 (13.7%) were post-stroke or caregivers. Mean age was 71.10±8.29 and disease duration was 9.70±8.21 years.
social distancing and lockdown had significant effect on participants' medical care, function, health, and well-being: 61.8% reported their rehabilitative treatments ceased and 68.7 % associated worsening symptoms with cancelled rehabilitation or decreased physical activity. 35.9% of the respondents reported deterioration in gait and 25.4% reported increased need for assistance with ADL. Relative to the period before lockdown, 42.6% of the respondents reported that they felt more tired and 43.3% reported increase in at least one of the following: depression, anxiety, loneliness, or worry about the future
PAM levels were inversely correlated with increased tiredness (r=-0.26, p<.001) and worsening symptoms (r=-0.23 p=0.001), which indicated that relative to respondents with high PAM scores, those with lower activation scores experienced more tiredness and worsening of symptoms during the lockdown.
social distancing and lockdown had significant effect on participants' medical care, function, health, and well-being: 61.8% reported their rehabilitative treatments ceased and 68.7 % associated worsening symptoms with cancelled rehabilitation or decreased physical activity. 35.9% of the respondents reported deterioration in gait and 25.4% reported increased need for assistance with ADL. Relative to the period before lockdown, 42.6% of the respondents reported that they felt more tired and 43.3% reported increase in at least one of the following: depression, anxiety, loneliness, or worry about the future
PAM levels were inversely correlated with increased tiredness (r=-0.26, p<.001) and worsening symptoms (r=-0.23 p=0.001), which indicated that relative to respondents with high PAM scores, those with lower activation scores experienced more tiredness and worsening of symptoms during the lockdown.
Conclusion(s): Inability to maintain routine activities due to lockdown had a major negative impact on patients with PD or post-stroke. Supporting patient activation may empower patients in times of stress.
Implications: A link between patient’s knowledge, skill and confidence for managing their health and negative effects of social distancing may imply that supporting these aspects can help patients to maintain their physical and mental health in times of dramatic change in life circumstances. Also, healthcare community should develop strategies to maintain the delivery of rehabilitative care and exercise even during social distancing since it reported to be an important.
Funding, acknowledgements: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors
Keywords: COVID-19, Parkinson’s disease, Self-management
Topic: COVID-19
Did this work require ethics approval? Yes
Institution: University of Haifa, Israel
Committee: Ethics Committee of the University of Haifa
Ethics number: 203/20
All authors, affiliations and abstracts have been published as submitted.
