Aerobic exercise therapy (AET) and cognitive behavioral therapy (CBT) are hypothesized to be both more effective in improving activity level and, with that, decreasing experienced fatigue of FSHD patients compared to the usual care. The maintenance…
ID
Bron
Verkorte titel
Aandoening
facioscapulohumeral dystrophy, FSHD, facioscapulohumerale dystrofie, muscular dystrophy, muscle disease, spierziekten, spierdystrofie, neuromuscular disease, neuromusculaire aandoeningen
Ondersteuning
Onderzoeksproduct en/of interventie
Uitkomstmaten
Primaire uitkomstmaten
Experienced fatigue
Achtergrond van het onderzoek
In facioscapulohumeral dystrophy (FSHD) muscle function is impaired and declines over time. Currently there is no effective therapeutic treatment available for FSHD. Loss of muscle strength contributes to experienced fatigue through a lower level of physical activity. Fatigue and physical inactivity determine social dependency and loss of participation. Therefore, to decrease experienced fatigue and improve quality of life, two distinctly different therapeutic approaches can be followed: aerobic exercise training (AET) to maintain functional capacity or a cognitive-behavioral approach (CBT) to stimulate an active life-style yet avoiding excessive physical strain. There is preliminary evidence for the effectiveness of aerobic exercise in FSHD. CBT has been proven effective in chronic fatigue syndrome and post-cancer fatigue. AET and CBT are hypothesized to be both more effective in improving activity level and, with that, decreasing experienced fatigue of FSHD patients compared to the usual care. The maintenance of the beneficial effects of CBT may be longer than those of AET, because the changes in activity level are achieved more intrinsically.
Doel van het onderzoek
Aerobic exercise therapy (AET) and cognitive behavioral therapy (CBT) are hypothesized to be both more effective in improving activity level and, with that, decreasing experienced fatigue of FSHD patients compared to the usual care. The maintenance of the beneficial effects of CBT may be longer than those of AET, because the changes in activity level are achieved more intrinsically.
Onderzoeksopzet
- at baseline t=0
- after the treatment period t = 4 months
- after three motnhs follow-up t = 7 months
- aftre 6 months follow-up t = 10 months
Onderzoeksproduct en/of interventie
Cognitive behavioral therapy, 1-hour session, once a week in the expert centre of chronic fatigue, during 16 weeks.
OR aerobic exercise therapy, 1-hour session, three times a week, one session at a rehabilitation centre, two sessions at home during 16 weeks.
Publiek
Department of Rehabilitation<br>
Huispost 898<br>
Postbus 9101
N.B.M. Voet
Nijmegen 6500 HB
The Netherlands
+31 (0)24 3668426
n.voet@reval.umcn.nl
Wetenschappelijk
Department of Rehabilitation<br>
Huispost 898<br>
Postbus 9101
N.B.M. Voet
Nijmegen 6500 HB
The Netherlands
+31 (0)24 3668426
n.voet@reval.umcn.nl
Belangrijkste voorwaarden om deel te mogen nemen (Inclusiecriteria)
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
Belangrijkste redenen om niet deel te kunnen nemen (Exclusiecriteria)
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)
Opzet
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