Myasthenia gravis: do not forget the patient perspective

Gilhus, Nils Erik; Verschuuren, Jan; Hovland, Sandra Iren Barkås; Simmonds, Huw; Groot, F.A.; Palace, Jacqueline

doi:10.1016/j.nmd.2021.07.396

Cited by 13 publications

(19 citation statements)

References 91 publications

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“…Similarly, acute hospitalizations for MG is most often caused by respiratory infection with exacerbation of general muscle strength and with a risk of hypoventilation [ 2 ]. Reduced respiratory capacity in MG influences daily-life functions, impairs quality of life, and increases the anxiety for severe exacerbations [ 42 ]. MG with MuSK antibodies, thymoma MG, older age, and respiratory tract comorbidities all represent risk factors for insufficient ventilation and a severe generalized MG [ 43 ].…”

Section: Discussionmentioning

confidence: 99%

Myasthenia gravis, respiratory function, and respiratory tract disease

Gilhus

2023

J Neurol

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Myasthenia gravis (MG) is characterized by muscle weakness caused by autoantibodies that bind to the postsynaptic membrane at the neuromuscular junction and impair acetylcholine receptor function. Weakness of respiratory muscles represents the most severe MG manifestation, and 10–15% of all patients experience an MG crisis with the need of mechanical ventilatory support at least once in their life. MG patients with respiratory muscle weakness need active immunosuppressive drug treatment long term, and they need regular specialist follow-up. Comorbidities affecting respiratory function need attention and optimal treatment. Respiratory tract infections can lead to MG exacerbations and precipitate an MG crisis. Intravenous immunoglobulin and plasma exchange are the core treatments for severe MG exacerbations. High-dose corticosteroids, complement inhibitors, and FcRn blockers represent fast-acting treatments that are effective in most MG patients. Neonatal myasthenia is a transient condition with muscle weakness in the newborn caused by mother’s muscle antibodies. In rare cases, treatment of respiratory muscle weakness in the baby is required.

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Section: Discussionmentioning

confidence: 99%

Myasthenia gravis, respiratory function, and respiratory tract disease

Gilhus

2023

J Neurol

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“…A broad range of symptoms and deficits can be recorded as scores in MG-specific outcome forms or registered by specific questioning during ordinary consultations ( 20 ). In our recent article where we applied the MG patient perspective, we discussed patient needs in detail ( 15 ). The article was co-authored by MG experts and user representatives from three different countries.…”

Section: Patient Needsmentioning

confidence: 99%

“…Younger patients and females report more limitations and a poorer disease-specific quality of life. Quality of life does not seem to have improved for MG patients during the last decades, despite more effective immunosuppressive treatment ( 15 ). Nearly one third of MG patients answered “no” when asked if they were satisfied with their current MG status ( 22 ).…”

Section: Patient Needsmentioning

confidence: 99%

“…Most fields of medical research are relevant in the patient perspective and may benefit from user participation. Diagnostic precision is important for both patient and neurologist and should include MG subgroup and phenotype ( 15 ). Patients know that research on disease mechanisms are necessary to improve treatment.…”

Section: Patient Needsmentioning

confidence: 99%

“…The linguistic shift from “patient” to “user” reflects a change in ideology ( 14 ). Our recent paper has illustrated the complex needs of MG patients ( 15 ). The patients themselves should be partners in the project to improve the present situation.…”

Section: Introductionmentioning

confidence: 99%

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User Involvement in Myasthenia Gravis Research

Gilhus

Hovland²

2022

Front. Neurol.

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Personality factors in patients with myasthenia gravis: A prospective study

Jordan,

Förster,

Buchholz

et al. 2023

Brain and Behavior

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IntroductionIn myasthenia gravis (MG), depression and anxiety have frequently been reported as comorbidities. However, little is known about personality characteristics in MG patients. We aimed to characterise personality traits in MG and to correlate them with disease severity and disease course.MethodsThe Big Five Inventory data questionnaire was used to investigate personality traits in 44 MG patients and 45 healthy controls similar in age and gender. In 28 MG patients, a caregiver was also available for patient assessments to limit bias associated with social desirability in patients’ responses. Patients were assessed with regard to premorbid personality (before manifestation of MG) and to present condition. In addition, anxiety and depression scales (Hospital Anxiety and Depression Scale and Beck Anxiety Inventory) were applied.ResultsCompared to controls, MG patients showed significantly higher levels of neuroticism, whereas openness and extraversion were significantly lower. Agreeableness and conscientiousness did not differ between groups. Neuroticism was influenced by disease severity such as generalization of weakness, presence of thymoma, and bulbar involvement as well as disease duration. Neuroticism correlated with premorbid level of neuroticism but also with depression and anxiety scores.ConclusionA personality profile of increased neuroticism and lower openness and extraversion in MG patients may contribute considerably to the perception of disease severity. It may also be related to frequent comorbidities such as anxiety and depression. Although premorbid levels of neuroticism were increased, this characteristic may also increase considerably during the course of the disease. The data indicate that muscle weakness in MG is accompanied or even complicated by psychological aspects. Therefore, a psychological and behavioral intervention in addition to the specific pharmacological therapy might be of particular value.

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Myasthenia gravis: do not forget the patient perspective

Cited by 13 publications

References 91 publications

Myasthenia gravis, respiratory function, and respiratory tract disease

Myasthenia gravis, respiratory function, and respiratory tract disease

User Involvement in Myasthenia Gravis Research

Personality factors in patients with myasthenia gravis: A prospective study

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