The COVID-19 pandemic exacerbates health problems by reducing access to adapted and advanced physical rehabilitation for several people who need rehabilitation services, including the population with myotonic dystrophy type 1 (DM1). The PACE tool, an innovative web tool integrating pragmatic physical activity programs, seems to be an interesting and innovative intervention to counter physical deficiencies of people with DM1, which are unfortunately accentuated by the pandemic, while reducing the risk of COVID-19 exposure. Objectives: 1) Evaluate the feasibility, usability and acceptability of the PACE tool in the DM1 population; 2) Evaluate the effects of the intervention on their physical and cognitive health; and 3) Estimate the cost-effectiveness ratio of this intervention. Method: Sixty people (experimental group = 40 and control group = 20) will participate in this randomized intervention study. Participants in the experimental group will be assigned to one of the 35 physical activity programs adapted to their condition of the PACE tool. The program must be performed on a daily basis for a period of 12 weeks. Physical and cognitive health will be assessed before and after the remote intervention via ZOOM, for all participants.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
PREVENTION
Masking
NONE
Enrollment
40
Participant will have to do exercise at home everyday (15min/day)
Groupe de recherche interdisciplinaire Groupe de recherche interdisciplinaire sur les maladies neuromusculaires
Jonquière, Quebec, Canada
Université du Québec à Chicoutimi
Saguenay, Quebec, Canada
Change in Functional capacity from baseline to week 12
Short physical performance battery Functional reach test
Time frame: Week 12
Change in the Level of physical activity from baseline to week 12
Rapid Assessment of physical Activity \& International Physical Activity Questionnaires
Time frame: Week 12
Feasability/acceptability of the program and Satisfaction
Number of sessions completed/planned Likert System Usability Scale.
Time frame: Week 12
Changes in the score of the Fatigue and Daytime Sleepiness Scale from baseline to week 12
Changes in the score of the Fatigue and Daytime Sleepiness Scale (FDSS). The FDSS is a 12-item questionnaire where all questions are scored from 0 to 2. A higher score means more daytime sleepiness and fatigue.
Time frame: Week 12
Changes in the Marin apathy scale from baseline to week 12
Changes in the Marin apathy scale. The Marin apathy scale is scored by the clinician where he interviews the subject and then scores an 18-item list on a scale of 1 to 4. A high score means more apathy.
Time frame: Week 12
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