ife Balance Study
- Conditions
- euromuscular diseasesSpierziektenFascio Scapulo Humeral Dystrophy FSHDFascioscapulohumerale dystrofie FSHDMitochondrial Myopathy MMMitochondriële myopathie MM
- Registration Number
- NL-OMON29479
- Lead Sponsor
- Radboudumc
- Brief Summary
ot published yet
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Pending
- Sex
- Not specified
- Target Recruitment
- 48
Inclusion Criteria
Diagnosed with FSHD or MM,
- age ≥ 18 years,
Exclusion Criteria
- patients with co-morbidity with symptoms that include severe fatigue;
- co-morbidity that interferes with actively taking part in the intervention sessions (e.g. severe psychiatric diagnoses or people with limited life expectancy);
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Self-perceived participation measured with the COPM (Canadian Occupational Performance Measure)
- Secondary Outcome Measures
Name Time Method - Activity balance (Activity Calculator, AC; Activity Card Sort-NL(18-65), ACS_NL(18-65) and life balance (Occupational Balance Questionnaire, OBQ<br /><br /><br><br>- fatigue (Checklist Individual Strength-fatigue, CIS-fatigue); <br /><br>- participation (Utrecht Scale for Evaluation of Rehabilitation-Participation, USER-P); <br /><br>- health status (General Health Questionnaire, GHQ); <br /><br>- quality of life (Short Form Health Survey-36, SF-36); and <br /><br>- self-efficacy regarding implementation of energy conservation strategies (Self-Efficacy in Performance of Energy Conservation Strategies Assessment, SEPECSA).<br>