ifebalance; an important outcome for fatigue management in neuromuscular diseases
Withdrawn
- Conditions
- Facioscapulohumeral dystrophy (FSHD) and Mitochondrial myopathy (MM)10029317
- Registration Number
- NL-OMON48997
- Lead Sponsor
- Radboud Universitair Medisch Centrum
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Withdrawn
- Sex
- Not specified
- Target Recruitment
- 60
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
- depression or other major psychiatric disorders
- severe cardiorespiratory and/or onclological disease limiting life expectance or independency in daily life
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method <p>The primary outcome will be participation in activities measured with the<br /><br>Canadian Occupational Performance Measure, COPM (performance and satisfaction<br /><br>scales).</p><br>
- Secondary Outcome Measures
Name Time Method <p>Secondary outcomes will be activity balance and life balance (Activity<br /><br>Calculator, AC, Activity Card Sort-Dutch version, ACS-NL(18-65)) and life<br /><br>balance (Occupational Balance Questionnaire, Dutch version, OBQ-NL); fatigue<br /><br>(Checklist Individual Strength-subscale fatigue, CIS-fatigue); participation<br /><br>(Utrecht Scale for Evaluation of Rehabilitation-Participation, USER-P); health<br /><br>status (General Health Questionnaire, GHQ); quality of life (Short Form-36,<br /><br>SF-36); and self-efficacy regarding implementation of energy conservation<br /><br>strategies (Self-Efficacy in Performance of Energy Conservation Strategies<br /><br>Assessment, SEPECSA).</p><br>