Muscle disease neuromuscular disease
Conditions
Interventions
The Energetic program lasts 16 weeks: the first 9 weeks sessions twice a week
and the last 7 weeks once a week. The program includes four modules: 1)
tailored aerobic exercise training
2) education about aerobic exercise
3)
self-management training in applying energy conservation strategies
and 4)
implementation and relapse prevention in daily life. In this program, next of
kin will also be involved. At three months follow-up a recall session is
organized.
During the first year 5 grou
Sponsors
Universitair Medisch Centrum Sint Radboud
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: -Adults between 18 and 65 years of age - Having one of the following muscle diseases: FascioScapuloHumeral Dystrophy (FSHD), Inclusion Body Myositis (IBM), or Mitochondrial Myopathy (MM) (n=30) or other neuromuscular diseases (n=20) - Being severely fatigued (CIS-fatigue > 35); -Being cardiopulmonary stable and capable of aerobic training (as determined using a Submaximal cycling exercise test with ECG (electrocardiography) and advice from a consultant cardiologist and pulmonologist); - Being motivated, committed to the program and *ready to change* which is discussed with the patient during the screening by a rehabilitation physician and an occupational therapist; using motivational interviewing tools (advantages /disadvantages matrix; a visual analogue scale, VAS, to rate the importance of participation in de program and a VAS to rate the confidence the patient has that participation in the program is feasible for them) - Being able to formulate at least 2 individual participation goals during the interview with the occupational therapist.
Exclusion criteria
Exclusion criteria: - Active depression or other psychiatric disorder as indicated by a consultant psychologist or by the medical history. - Pregnancy, - Limited life expectancy (
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Social participation is evaluated with the Canadian Occupational Performance Measure (COPM) as primary outcome measure. | — |
Secondary
| Measure | Time frame |
|---|---|
| The Activity Card Sort (ACS), 6 minute walking test (6MWT) and Checklist Individual Strength subscale fatigue (CIS-Fatigue) and General Self- Efficacy Scale (GSE) are secondary measures Also a health diary (health care costs and sick leave) is kept by all participants in the study. Efficiency is studied from a societal perspective calculating costs and quality adjusted life years. | — |
Countries
Netherlands
Outcome results
None listed