A Remote Physical Activity Program Via the PACE Tool to Counter the Physical Impairments, Accentuated by the Pandemic, in the Population Suffering from Type 1 Myotonic Dystrophy
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Myotonic Dystrophy Type 1 (DM1)
- Sponsor
- Université du Québec à Chicoutimi
- Enrollment
- 40
- Locations
- 2
- Primary Endpoint
- Change in Functional capacity from baseline to week 12
- Status
- Active, not recruiting
- Last Updated
- last year
Overview
Brief Summary
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.
Investigators
Eligibility Criteria
Inclusion Criteria
- •DM1 diagnosis must be confirmed by genetic analysis (juvenile, adults or late-onset phenotypes);
- •Aged between 18 and 60 years old;
- •Be able to do exercise;
- •Subjects must be able to give their consent freely and voluntarily.
Exclusion Criteria
- •Patients who already train (\>3 times per week or \>150min/week);
- •Don't speak french or english;
- •Are not able to do exercise (even in sitting position);
Outcomes
Primary Outcomes
Change in Functional capacity from baseline to week 12
Time Frame: Week 12
Short physical performance battery Functional reach test
Change in the Level of physical activity from baseline to week 12
Time Frame: Week 12
Rapid Assessment of physical Activity \& International Physical Activity Questionnaires
Feasability/acceptability of the program and Satisfaction
Time Frame: Week 12
Number of sessions completed/planned Likert System Usability Scale.
Secondary Outcomes
- Changes in the score of the Fatigue and Daytime Sleepiness Scale from baseline to week 12(Week 12)
- Changes in the Marin apathy scale from baseline to week 12(Week 12)