The Impact of a Societal Lockdown on Those With Spinal Cord and Brain Injuries

Study Overview
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Brief Summary
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Document and evaluate the impact of societal restrictions due to the pandemic on SCI- and ABI-related disability and functional impairments, and the resultant effects on psychological wellbeing, physical wellbeing and quality of life for those with SCI/ABI.

Detailed Description
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The investigators will conduct a longitudinal survey to examine the impact of COVID19 on those with SCI and ABI. An a priori sample size of 117 individuals based on an alpha level of .05 and level of acceptable error at 3% was calculated. Anticipating for loss to follow up rate of up to 20%, a total of 142 participants will be recruited. Patients will be recruited among those who attend virtual medical appointments at Parkwood Institute for ABI and SCI. We will also liaise with SCI-Ontario and the Ontario Brain Injury Association to assist in the recruitment of additional participants. Those who consent will complete an online survey on enrollment into the study, and subsequently at 3 and 6 months. Demographic data of the individuals participating in the study will be recorded. Participants' access to health care services will be evaluated using the following subdomains: medical care, complementary care, medications/equipment, satisfaction/acceptability, affordability, ability to engage, and indirect support.

Official Title
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COVID-19 and Disability: The Impact of a Societal Lockdown on Those With Spinal Cord and Brain Injuries

Conditions
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Brain Injuries, Stroke, Spinal Cord Injuries

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: stroke, spinal cord injury (traumatic and non-traumatic) or acquired brain injury (of all severities, including concussion) live in the community have the cognitive capacity to understand and complete the measures Exclusion Criteria: does not have the cognitive capacity to understand and complete the measures does not speak English

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| SCI, brain injury, stroke Participants<br>Those 18 years of age and older, diagnosed with a stroke, spinal cord injury (traumatic and non-traumatic), or acquired brain injury (of all severities, including concussion) living in the community will be included. Additionally, only those the cognitive capacity to understand and complete the measures will be included. Those who consent will complete an online survey on enrollment into the study, and subsequently at 3 and 6 months. | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in Fear of COVID-19 | Fear of COVID-19 Questionnaire | baseline, 3 months, 6 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Change in ability to participate in social roles and activities | NeuroQol SF v1.0 - Ability to Part. in SRA | baseline, 3 months, 6 months | 
| Change in depressive symptoms | NeuroQol SF v1.0 - Depression | baseline, 3 months, 6 months | 
| Change in positive affect and well-being | NeuroQol SF v1.0 - Pos. Affect & Well-Being | baseline, 3 months, 6 months | 
| Change in anxiety | NeuroQol SF v1.0 - Anxiety | baseline, 3 months, 6 months | 
| Change in fatigue | NeuroQol SF v1.0 - Fatigue | baseline, 3 months, 6 months | 
| Change in emotional and behavioural dyscontrol | NeuroQol SF v1.0 - Emotional & Beh. Dyscontrol | baseline, 3 months, 6 months | 
| Change in satisfaction with social roles and activities | NeuroQol SF v1.0 - Satisfaction w SRA | baseline, 3 months, 6 months | 
| Change in sleep disturbance | NeuroQol SF v1.0 - Sleep Disturbance | baseline, 3 months, 6 months | 
| Change in stigma | NeuroQol SF v1.0 - Stigma | baseline, 3 months, 6 months | 
| Change in cognitive function | NeuroQol SF v1.0 - Cognitive Function | baseline, 3 months, 6 months | 
| Change in social distancing strategies used | 23 questions about strategies to social distance | baseline, 3 months, 6 months | 
| Change in thoughts and feelings about social distancing | 22 questions about social distancing | baseline, 3 months, 6 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Stroke, Spinal Cord Injury, Brain Injury, COVID, Access to health care, Mental Health