• Gary Cutter, Haichang Xin, Inmaculada Aban, Ted M Burns, Phillip H Allman, Ramin Farzaneh-Far, Petra W Duda, and Henry J Kaminski.
• Department of Biostatistics, University of Alabama at Birmingham, Birmingham, Alabama.
• Muscle Nerve. 2019 Dec 1; 60 (6): 707-715.

IntroductionThe Myasthenia Gravis Patient Registry (MGR) is a voluntary, patient-submitted database dedicated to improve understanding of care/burden of myasthenia gravis (MG).MethodsIn this study we present analyses of baseline records through July 2017 (n = 1140) containing data on the MG-Activities of Daily Living (MG-ADL) and the MG 15-item Quality of Life (MG-QOL15) instruments, two validated scales assessing quality of life in MG patients at sign-up into the MGR.ResultsMost registrants reported moderate to severe impairment of health-related quality of life, with a median MG-ADL score of 6 and a median MG-QOL15 score of 21. Seventy-one percent of the patients had received pyridostigmine. Corticosteroids, mycophenolate mofetil, and azathioprine were the most common immunomodulators/immunosuppressants, with 85% of participants having ever using one of these agents. Forty-seven registrants reported receiving intravenous immunoglobulin, and 30% received plasma exchange. Twelve percent reported other treatments, and 40% were unsure whether they received less common therapies. Forty percent had undergone thymectomy.DiscussionThe MGR data correlate well with other MG cohorts. Many MG patients remain negatively impacted despite treatment.© 2019 The Authors. Muscle & Nerve published by Wiley Periodicals, Inc.

36 keywords...

hide…