Video Consultation and Mitochondrial Myopathies: Study of Efficacy and Tolerance of a Personalized Training Program at Home
Overview
- Phase
- N/A
- Intervention
- Not specified
- Conditions
- Mitochondrial Myopathies
- Sponsor
- Centre Hospitalier Universitaire de Nice
- Enrollment
- 15
- Locations
- 1
- Primary Endpoint
- Change of overall functional capacity of moving during training period from 6 months (S0) to 9 (S12) and 12 (S24) months
- Status
- Recruiting
- Last Updated
- last year
Overview
Brief Summary
Positive effect of physical activity on health arouses a strong interest at international level and is developped within the scope of national programs. Recommandations exist but must be designed for patients with functional limitations of activities.
Patients with mitochondrial diseases have exercice intolerance with an increase of muscular weakness and fatigue after low exercice volume. Theses patients have functional limitations of activities. In order to establish an appropriate training programme, it will be important to define and consider the physical condition. The Society of Mitochondrial Medecine published recommandations for management of theses patients,However, theses recommandations do not allow them to propose a training program of what can be done. For these vulnerable patients, therapists are responsible fo advising a training programm without guidelines to establish its terms and conditions. In addition, some exercices do not appear to have been the subject of complete assessmeents.
Regarding training programs (aerobic training, muscle reinforcement, miwed training), scientific literature shows a significant genetic and clinical variabilities, as well as a lack of data on clinical severity of included patients. In addition, the lack of informations regarding training effects of heteroplamy level limits our comprehension of mechanisms involved in adaptation of mitochondrial pool during training. Therefore, further reserchs on this subject are essential.
It is necessary to offer these patients a follow-up and personalized training program, which are in adequation with daily life. Some publications call on specifics concepts which are not compatible with day-to-day life. The investigators think it will be useful to investigate training effects in order to have practival conclusions, easily reproducible at home by patients with simple and inexpensive equipment. In this context, video consultation could allow the close follow-up of these patients.
The investigators hypothesize that a mixed training (endurance and muscle reinforcement), personalized, at home and followed by video consultation have positive effects on some physical criteria (such as musclar strength, tolerance to effort, functional abilities) without increasing heteroplasmy and creatine phosphokinase levels.
Investigators
Eligibility Criteria
Inclusion Criteria
- Not provided
Exclusion Criteria
- Not provided
Outcomes
Primary Outcomes
Change of overall functional capacity of moving during training period from 6 months (S0) to 9 (S12) and 12 (S24) months
Time Frame: At 6 (S0), 9 (S12) and 12 (S24) months
The overall functional capacity of moving will be measured by the time to perform the Timed Up and Go test.
Secondary Outcomes
- Change of quality of life during training period from 6 months (S0) to 9 (S12) and 12 (S24) months(At 6 (S0), 9 (S12) and 12 (S24) months)
- Check effects of a training program on clinical and biological tolerance, by assessing the modification of heteroplasmy level(At 6 (S0), 9 (S12) and 12 (S24) months)
- Check effects of a training program on clinical and biological tolerance, by regularly assessing the effort-related myalgia(From 6 months (S0) to 12 months (S24))
- Describe the natural history of disease without training on muscular strength of upper and lower limbs(At 0 (S-24) and 6 months (S0))
- Change of muscular endurance of upper and lower limbs during training period from 6 months (S0) to 9 (S12) and 12 (S24) months(At 6 (S0), 9 (S12) and 12 (S24) months)
- Change of functional abilities during transferts during training period from 6 months (S0) to 9 (S12) and 12 (S24) months(At 6 (S0), 9 (S12) and 12 (S24) months)
- Change of muscular strength of upper and lower limbs during training period from 6 months (S0) to 9 (S12) and 12 (S24) months(At 6 (S0), 9 (S12) and 12 (S24) months)
- Change of functional abilities in walking during training period from 6 months (S0) to 9 (S12) and 12 (S24) months(At 6 (S0), 9 (S12) and 12 (S24) months)
- Change of clinical severity of the disease during training period from 6 months (S0) to 9 (S12) and 12 (S24) months(At 6 (S0), 9 (S12) and 12 (S24) months)
- Establish a "dose-effect" relationship between the training frequency and effects on clinical parameters (strength, endurance and functionnal abilities such as global moving, walking and during transferts)(From 0 (S-24) to 12 months (S24))
- Change of tiredness felt during training period from 6 months (S0) to 9 (S12) and 12 (S24) months(At 6 (S0), 9 (S12) and 12 (S24) months)
- Check effects of a training program on clinical and biological tolerance, by assessing the blood creatine phosphokinase levels which is a muscle damage marker(From 0 (S-24) to 12 months (S24))
- Check effect of a training program on reported physical condition by assessing the Recent Physical Activity Questionnaire (RPAQ).(At 6 (S0), 9 (S12) and 12 (S24) months)
- Check effect of a training program on reported physical condition by assessing the Global Physical Activity Questionnaire (GPAQ).(At 6 (S0), 9 (S12) and 12 (S24) months)
- Describe the natural history of disease without training on heteroplasmy level(At 0 (S-24) and 6 months (S0))
- Describe the natural history of disease without training on blood creatine phosphokinase levels(At 0 (S-24) and 6 months (S0))
- Describe the natural history of disease without training on functional abilities in walking(At 0 (S-24) and 6 months (S0))
- Describe the natural history of disease without training on functional abilities during transfert(At 0 (S-24) and 6 months (S0))
- Describe the natural history of disease without training on quality of life(At 0 (S-24) and 6 months (S0))
- Describe the natural history of disease without training on tiredness felt(At 0 (S-24) and 6 months (S0))
- Describe the natural history of disease without training on reported physical condition by assessing the Recent Physical Activity Questionnaire (RPAQ).(At 0 (S-24) and 6 months (S0))
- Describe the natural history of disease without training on reported physical condition by assessing the Global Physical Activity Questionnaire (GPAQ).(At 0 (S-24) and 6 months (S0))