Facioscapulohumeral dystrophy (FSHD) and Mitochondrial myopathy (MM)
Conditions
Interventions
The individualized one-to-one face-to-face program, MF, consists of education,
practice, evaluation and implementation of energy conservation strategies in
daily life. Following education, persons a
Sponsors
Radboud Universitair Medisch Centrum
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: - age 18 years or older; - diagnose: FacioScapuloHumerale Dystrofie (FSHD) or Mitochondrial Myopathy (MM); - sufficient command of Dutch language, to be able to fill in questionnaires; - Checklist Individual Strength- fatigue (CIS-Fatigue) * 35, indicating severe fatigue
Exclusion criteria
Exclusion criteria: - depression or other major psychiatric disorders - severe cardiorespiratory and/or onclological disease limiting life expectance or independency in daily life
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary outcome will be participation in activities measured with the Canadian Occupational Performance Measure, COPM (performance and satisfaction scales). | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary outcomes will be activity balance and life balance (Activity Calculator, AC, Activity Card Sort-Dutch version, ACS-NL(18-65)) and life balance (Occupational Balance Questionnaire, Dutch version, OBQ-NL); fatigue (Checklist Individual Strength-subscale fatigue, CIS-fatigue); participation (Utrecht Scale for Evaluation of Rehabilitation-Participation, USER-P); health status (General Health Questionnaire, GHQ); quality of life (Short Form-36, SF-36); and self-efficacy regarding implementation of energy conservation strategies (Self-Efficacy in Performance of Energy Conservation Strategies Assessment, SEPECSA). | — |
Countries
Netherlands
Outcome results
None listed