Neuromuscular diseases Spierziekten Fascio Scapulo Humeral Dystrophy FSHD Fascioscapulohumerale dystrofie FSHD Mitochondrial Myopathy MM Mitochondriële myopathie MM
Conditions
Interventions
Intervention group
Participants in the intervention group will receive a personalized individual face-to-face program ’Managing Fatigue’ (Packer, Brink et al. 1995). The Program ‘Managing Fatigue’ co
Sponsors
Radboudumc
Eligibility
Inclusion criteria
Inclusion criteria: - Diagnosed with FSHD or MM, - age ≥ 18 years, - severe fatigue, confirmed by the CIS-Fatigue ≥ 35, - sufficient mastery of the Dutch language to participate in conversation with the therapist, and - informed consent (written) - able to identify, using the COPM, at least three problems in occupational performance that they wish to improve.
Exclusion criteria
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); - current involvement in other intervention studies where improvement of fatigue is a possible outcome; - having received occupational therapy that focused on fatigue management, in the previous twelve months.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Self-perceived participation measured with the COPM (Canadian Occupational Performance Measure) | — |
Secondary
| Measure | Time frame |
|---|---|
| - Activity balance (Activity Calculator, AC; Activity Card Sort-NL(18-65), ACS_NL(18-65) and life balance (Occupational Balance Questionnaire, OBQ - fatigue (Checklist Individual Strength-fatigue, CIS-fatigue); - participation (Utrecht Scale for Evaluation of Rehabilitation-Participation, USER-P); - health status (General Health Questionnaire, GHQ); - quality of life (Short Form Health Survey-36, SF-36); and - self-efficacy regarding implementation of energy conservation strategies (Self-Efficacy in Performance of Energy Conservation Strategies Assessment, SEPECSA). | — |
Contacts
Public ContactLeenders J.M.P.
Radboudumc
Outcome results
None listed