Cross-sectional analysis of the Myasthenia Gravis Patient Registry: Disability and treatment

Muscle Nerve. 2019 Dec;60(6):707-715. doi: 10.1002/mus.26695. Epub 2019 Oct 9.

Abstract

Introduction: The Myasthenia Gravis Patient Registry (MGR) is a voluntary, patient-submitted database dedicated to improve understanding of care/burden of myasthenia gravis (MG).

Methods: In 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.

Results: Most 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.

Discussion: The MGR data correlate well with other MG cohorts. Many MG patients remain negatively impacted despite treatment.

Keywords: ADL; MG; MGFA; QOL; myasthenia.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living*
  • Adrenal Cortex Hormones / therapeutic use
  • Adult
  • Aged
  • Azathioprine / therapeutic use
  • Cholinesterase Inhibitors / therapeutic use*
  • Cross-Sectional Studies
  • Female
  • Humans
  • Immunoglobulins, Intravenous / therapeutic use
  • Immunologic Factors / therapeutic use
  • Immunosuppressive Agents / therapeutic use*
  • Male
  • Middle Aged
  • Myasthenia Gravis / physiopathology*
  • Myasthenia Gravis / therapy*
  • Mycophenolic Acid / therapeutic use
  • Plasma Exchange / methods
  • Pyridostigmine Bromide / therapeutic use
  • Quality of Life*
  • Registries

Substances

  • Adrenal Cortex Hormones
  • Cholinesterase Inhibitors
  • Immunoglobulins, Intravenous
  • Immunologic Factors
  • Immunosuppressive Agents
  • Mycophenolic Acid
  • Pyridostigmine Bromide
  • Azathioprine