Abstract
Myasthenia gravis: do not forget the patient perspective
Highlights
Patients with a chronic disease often have worries about the future and experience impairment in daily functions and quality of life
The aim of this review is to focus on Myasthenia gravis (MG) aspects that in our experience are very important for the patient, but less so for the treating neurologists
Patient-reported data and registry data both illustrate that MG patients often experience impaired daily functions even when their muscle weakness is only mild to moderate
Summary
Patients with a chronic disease often have worries about the future and experience impairment in daily functions and quality of life. Symptoms such as fatigue, pain, insomnia, and depression are common, often secondary to the primary disease manifestation. MG treatment aims at restoring the function of neuromuscular transmission [3] This can be done symptomatically by increasing acetylcholine availability through inhibition of acetylcholine esterase, or by suppression of the immune response against the postsynaptic muscle membrane. Patient-reported tools for MG include MG-ADL, MG Impairment Index and MG-QOL15 [2,12,13] The scores reflect patient satisfaction, adaptability and health status, but does not necessarily correlate to severity or deterioration of MG muscle weakness [14]. When evidencebased information is available, it should be presented for the patients
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