Determining Feasibility and Acceptability of Sharing Video Recordings With Patients With ALS and Caregivers
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About
Our objective in the proposed project is to: (a) operationalize and determine the feasibility and acceptability of a trial where clinic multi-disciplinary clinic (MDC) visits are audio/video recorded and shared with patients with ALS and their caregivers; (b) gather preliminary data examining the impact of routinely adding audio/video recordings of clinic visits to UC on self-management ability and other behavioral, health and health services outcomes at baseline (T0) and other regular interviews from enrollment (T1= 1 Week, T2= 3 Months); and (c) identify factors pertinent to the acceptability of our study protocol and the audio/video recording of visits.
Full description
We will conduct a single-site, two-arm, parallel group, patient-randomized, controlled, pilot trial with 3-month follow up, to determine the feasibility, acceptability, and potential effectiveness of sharing audio/video recordings of multidisciplinary ALS clinics with patients and their caregivers. We will recruit 24 patients with ALS and their caregivers over a recruitment period of 1 year. We are primarily interested in determining the feasibility of the trial and acceptability of the audio/video intervention. We will also explore the impact on the patients' ability to self-manage their care as well as exploratory outcomes, at baseline (T0 = pre-visit), at T1 (1 week), and at T2 (3 months).
Enrollment
Sex
Ages
Volunteers
Inclusion criteria
- diagnosed and primarily treated for Amyotrophic Lateral Sclerosis (ALS)
- Aged 18 years or greater
- Can communicate in English (verbally, on a computer, or with assistance)
- Have email
- Have internet access
- Willing to have their multidisciplinary clinic visit audio/video recorded for a 3 month period
Exclusion criteria
- Those without the capacity to provide consent, either themselves or via proxy
Trial design
Primary purpose
Allocation
Interventional model
Masking
79 participants in 2 patient groups
Trial contacts and locations
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Data sourced from clinicaltrials.gov
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