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. 2019 Dec;60(6):700-706.
doi: 10.1002/mus.26694. Epub 2019 Oct 22.

Employment in refractory myasthenia gravis: A Myasthenia Gravis Foundation of America Registry analysis

Linda Harris  1 , Inmaculada B Aban  2 , Haichang Xin  3 , Gary Cutter  2
Affiliations

Employment in refractory myasthenia gravis: A Myasthenia Gravis Foundation of America Registry analysis

Linda Harris et al. Muscle Nerve. 2019 Dec.

Abstract

Introduction: Labor-market participation is potentially very difficult for patients with refractory myasthenia gravis (MG). In this study, employment status and work absences are compared between refractory and nonrefractory MG.

Methods: Adults (aged 18-64 years, all diagnosed ≥2 years previously) were included if enrolled in the Myasthenia Gravis Foundation of America Patient Registry during July 2013 to February 2018.

Results: Seventy-six patients (9.2%) had refractory and 749 (90.8%) had nonrefractory disease; demographic data did not differ between groups. Relative to the nonrefractory group, the refractory group patients were more than twice as likely to work fewer hours per week (odds ratio [95% confidence interval]: currently employed, 2.777 [1.640-4.704]; employed over previous 6 months, 2.643 [1.595-4.380]), but those employed were not more likely to be absent from work.

Discussion: Because absence from the labor market adversely affects quality of life and personal finances, these findings reaffirm the considerable disease burden associated with refractory MG.

Keywords: MGFA Registry; absence from work; employment; myasthenia gravis; patient survey; refractory disease.

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Conflict of interest statement

L.H. was formerly employed by and holds stocks in Alexion Pharmaceuticals, Inc; I.B.A., and G.C. are employed by the University of Alabama at Birmingham, which received financial support from Alexion for this study; H.X. was formerly employed by the University of Alabama at Birmingham. G.C. is also president of Pythagoras, Inc, a private consulting company located in Birmingham, Alabama, and Professor of Biostatistics at the School of Public Health at the University of Alabama at Birmingham. G.C. has served as a member of consulting or advisory boards (Argenix, Atara Biotherapeutics, Axon, Biogen, Brainstorm Cell Therapeutics, Charleston Laboratories, Click Therapeutics, Genentech, Genzyme, GW Pharmaceuticals, Klein Buendel, MedDay Pharmaceuticals, MedImmune, Novartis, Roche, Scifluor Life Sciences, Somahlution, Teva, TG Therapeutics, and UT Houston) and data and safety monitoring boards (AMO Pharma, BioLineRx, Hisun USA, Horizon Pharma, Merck, Merck/Pfizer, Neurim Pharmaceuticals, National Heart, Lung, and Blood Institute [protocol review committee], National Institute of Child Health and Human Development [OPRU oversight committee], Novartis, Orphazyme, OPKO Biologics, Reata Pharmaceuticals, Receptos/Celgene, Sanofi‐Aventis, Teva).

Figures

Figure 1
Figure 1
Adjusted regression analyses examining the impact of demographic characteristics on: A, previous employment status (in the 6 months before enrollment); and B, current employment status. CI, confidence interval; GED, general equivalency diploma; MG, myasthenia gravis. *Overall effect of age for previous and current employment status: P < 0.01
Figure 2
Figure 2
Adjusted regression analyses examining the impact of demographic characteristics on absences from work among participants employed in the 6 months before enrollment. CI, confidence interval; GED, general equivalency diploma; MG, myasthenia gravis. *Overall effect of age, P = 0.51
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