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Understanding side effects of therapy for myasthenia gravis and their impact on daily life
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Journal Article
Understanding side effects of therapy for myasthenia gravis and their impact on daily life
2019
Overview
Background
Myasthenia gravis is a chronic, autoimmune, neuromuscular junction disorder characterized by skeletal muscle weakness. Current therapies for myasthenia gravis are associated with significant side effects. The objective of this study was to characterize the side effects, and associated health-related quality of life and treatment impacts, of traditional myasthenia gravis treatments.
Methods
This study had two phases; a Phase 1 interview and a 2-part web-based survey in Phase 2 that included brainstorming (Step 1) and rating (Step 2) exercises using group concept mapping. In Phase 1, all 14 participants reported experiencing side effects from myasthenia gravis treatments which had significant impacts on daily life. In Phase 2, 246 participants contributed to Step 1; 158 returned for Step 2.
Results
The brainstorming exercise produced 874 statements about side effects and their impact, which were reduced to 35 side effects and 23 impact-on-daily life statements. When rating these statements on severity, frequency, and tolerability, blood clots, infections/decreased immunity, weight gain, and diarrhea were the least tolerable and most severely rated. The most frequent and severe impacts were sleep interference and reduced physical and social activities.
Conclusions
Based on these findings, there appears to be a need for better and more tolerable treatments for myasthenia gravis patients.
Publisher
BioMed Central,BioMed Central Ltd,Springer Nature B.V,BMC
Subject
/ Adult
/ Diarrhea
/ Drug-Related Side Effects and Adverse Reactions - epidemiology
/ Drug-Related Side Effects and Adverse Reactions - etiology
/ Drug-Related Side Effects and Adverse Reactions - psychology
/ Female
/ Health
/ Health-related quality of life
/ Humans
/ Immunotherapy - adverse effects
/ Male
/ Medicine
/ Myasthenia Gravis - drug therapy
/ Neuromuscular disorders and peripheral neurology
/ Patients
/ Sleep
