The Neuromuscular Centre Maastricht UMC+ has developed Rasch-built outcome measures for several neuromuscular diseases. These outcome measures are so called Patient Reported Outcome Measures (PROMs): patients fill in a questionnaire, and report to what extent certain activities can be performed. With this instrument, it is easy for the doctor and the patient to evaluate daily functioning, as well as improvement or deterioration, for example after medication.
An international group of experts has determined that this instrument is the best outcome measure available for immune-mediated neuropathies (Guillain-Barré syndrome and chronic inflammatory polyneuropathy), and should be used in all future studies.
For several neuromuscular diseases proper Rasch-built outcome measure have yet to be developed.
For the following diseases, Rasch-built outcome measures have been developed:
• Myotonic dystrophy
• Small fibre neuropathy
• Guillain-Barré syndrome (GBS)
• Chronic inflammatory demyelinating polyneuropathy (CIDP)
• Multifocal motor neuropathy (MMN)
• Pompe’s disease
• Familial amyloid polyneuropathy (FAP)
• Chemotherapy-induced peripheral neuropathy (CIPN)