Author:
Bacci Elizabeth Dansie,Coyne Karin S.,Poon Jiat-Ling,Harris Linda,Boscoe Audra N.
Abstract
Abstract
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
Springer Science and Business Media LLC
Subject
Neurology (clinical),General Medicine
Reference18 articles.
1. Juel VC, Massey JM. Myasthenia gravis. Orphanet J Rare Dis. 2007;2:44.
2. Howard JF. Clinical overview of MG. 2015 [cited 22 December 2017]; Available from http://myasthenia.org/HealthProfessionals/ClinicalOverviewofMG.aspx.
3. National Institute of Neurological Disorders and Stroke (NINDS). Myasthenia Gravis Fact Sheet. 2015 July 27, 2015 [cited 2015 August 3]; Available from http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm.
4. Sanders DB, Evoli A. Immunosuppressive therapies in myasthenia gravis. Autoimmunity. 2010;43:428–35.
5. Dunand M, Botez SA, Borruat FX, Roux-Lombard P, Spertini F, Kuntzer T. Unsatisfactory outcomes in myasthenia gravis: influence by care providers. J Neurol. 2010;257:338–43.
Cited by
32 articles.
订阅此论文施引文献
订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献