facioscapulohumeral muscular dystrophy Landouzy Dejerine
Conditions
Interventions
one group will receive AET consisting of 3 days a week aerobic cycling exercise
for a period of 16 weeks. Twice a week they will exercise at home and once a
week individually guided in group session
Sponsors
Universitair Medisch Centrum Sint Radboud
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: (1) aged 18 years and older (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 |
|---|---|
| At baseline, after conclusion of the intervention and after 3 and 6 months follow-up experienced fatigue will be assessed by the subscale fatigue of the Checklist Individual Strength | — |
Secondary
| Measure | Time frame |
|---|---|
| aerobic exercise tolerance muscle strength cardiovascular risk factors limitations in autonomy and participation objective and subejctive phyiscal activity in daily life pain fall incidence psychological well being and sleeping pattern self perceived functional status coping style illness cognitions perceived control or self efficacy motivation concentration social support experienced fatigue of first relative caregiver strain optional: metabolic profile of muscles, blood and urine | — |
Countries
Netherlands
Outcome results
None listed