Cross-sectional analysis of the Myasthenia Gravis Patient Registry: Disability and treatment.
Muscle Nerve
; 60(6): 707-715, 2019 12.
Article
em En
| MEDLINE
| ID: mdl-31487038
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.Palavras-chave
Texto completo:
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Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
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Atividades Cotidianas
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Inibidores da Colinesterase
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Imunossupressores
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Miastenia Gravis
Tipo de estudo:
Observational_studies
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Prevalence_studies
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Risk_factors_studies
Limite:
Adult
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Aged
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Female
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Humans
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Male
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Middle aged
Idioma:
En
Ano de publicação:
2019
Tipo de documento:
Article