Postpoliomyelitis Syndrome, neuromuscular disease, exercise therapy, cognitive behavioral therapy, fatigue, activities of daily living, quality of life.
Conditions
Interventions
Patients fulfilling both inclusion and exclusion criteria will be randomised to one of three groups:
- Experimental group 1 (E1) will receive exercise therapy in a nearby rehabilitation centre durin
Sponsors
Academic Medical Center (AMC), Department of Rehabilitation
Eligibility
Inclusion criteria
Inclusion criteria: 1. Diagnosis of PPS according to the criteria of March and Dimes i.e. a. Prior paralytic poliomyelitis with evidence of motor neuron loss, as confirmed by history of the acute paralytic illness, signs of residual weakness and atrophy of muscles on neurologic examination, and signs of denervation on electromyography (EMG). b. A period of partial or complete functional recovery after acute paralytic poliomyelitis, followed by an interval (usually 15 years or more) of stable neurologic function. c. Gradual or sudden onset of progressive and persistent new muscle weakness or abnormal muscle fatigability (decreased endurance), with or without generalized fatigue, muscle atrophy, or muscle and joint pain. (Sudden onset may follow a period of inactivity, or trauma or surgery.) Less commonly, symptoms attributed to PPS include new problems with breathing or swallowing. d. Symptoms persist for at least a year. e. Exclusion of other neurologic, medical and orthopaedic problems as causes of symptoms. 2. Age between 18 and 70 years 3. A life-expectancy longer than one year 4. Consultation (not necessarily the first consultation) of a neurologist or physical medicine and rehabilitation specialist in the previous 5 years 5. Suffering from severe experienced fatigue (CIS-fatigue >= 35)
Exclusion criteria
Exclusion criteria: 1. Cognitive impairment 2. Insufficient mastery of the Dutch language 3. Pregnancy 4. Use of psychotropic drugs (except simple sleeping medication) or other psychiatric treatment. 5. Disabling co-morbidity interfering with the intervention programs or influencing outcome parameters (including cardiopulmonary disease like chest pain, arrhythmia, pacemaker, cardiac surgery, severe dyspnoea d’éffort or emphysema, epileptic seizures, poorly regulated diabetes mellitus). 6. Severe progressive weakness and atrophy 7. Inability to cycle on a bicycle ergometer.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Primary outcome measures are: - QoL (SF-36) - Limitations in activities (Sickness Impact Profile, domains: mobility range, mobility control, social behaviour) - Fatigue (Checklist Individual Strength, domain: fatigue) | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary outcome measures are: - Pain - Psychological well-being - Physical activity level in daily life - Perceived participation - Illness cognitions - Coping - Perceived control or self-efficacy - Cost effectiveness Additional secondary outcome measures for the exercise therapy group: - Cardiorespiratory fitness - Neuromuscular capacity - Functional capacity | — |
Contacts
Public ContactF.S. Koopman
University of Amsterdam Academic Medical Center Department of Rehabilitation PO Box 22660
Outcome results
None listed