facioscapulohumeral dystrophy, FSHD, facioscapulohumerale dystrofie, muscular dystrophy, muscle disease, spierziekten, spierdystrofie, neuromuscular disease, neuromusculaire aandoeningen
Conditions
Interventions
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: 1. Age between 18 and 70 years 2. A life-expectancy longer than one year 3. Suffering from severe experienced fatigue (i.e. a score on the CIS-fatigue >= 35) 4. Ability to walk independently (ankle-foot orthoses and canes are accepted) 5. Being able to exercise on a bicycle ergometer 6. Being able to complete the intervention
Exclusion criteria
Exclusion criteria: 1. Cognitive impairment 2. Insufficient mastery of the Dutch language 3. Disabling co-morbidity interfering with the intervention programs or influencing outcome parameters 4. Pregnancy 5. Use of psychotropic drugs (except simple sleeping medication) 6. Severe cardiopulmonary disease (chest pain, arrhythmia, pacemaker, cardiac surgery, severe dyspnoea d’ effort, emphysema) 7. Epileptic seizures 8. Poorly regulated diabetes mellitus or hypertension 9. Clinical depression, as diagnosed with Beck Depression Inventory for primary care (BDI-PC) (Arnau et al. 2001) (Beck et al. 1997)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Experienced fatigue | — |
Secondary
| Measure | Time frame |
|---|---|
| - aerobic exercise tolerance - muscle strength - fall incidence - quality of life - pain - psychological well-being and sleeping pattern - physical activity in daily life - self perceived functional status - limitations in participation and autonomy - coping - illness cognitions - motivation - concentration - caregiver strain - experienced fatigue partner - experienced fatigue partner over patient - social support - coping of partner - metabolic profiel of muscles, blood and urine | — |
Contacts
Radboud University Medical Centre Department of Rehabilitation Huispost 898 Postbus 9101