User Involvement in Myasthenia Gravis Research

Gilhus, Nils Erik; Hovland, Sandra Iren Barkås

doi:10.3389/fneur.2022.839769

Cited by 4 publications

(1 citation statement)

References 37 publications

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“…Since the members had complementary expertise and included patient representatives, we abstained from formal voting processes but instead obtained consensus through open discussions. The two patient representatives gave input on all aspects of the work, and particularly when deciding topics where MG‐specific treatment guidance was most needed [14].…”

Section: Methodsmentioning

confidence: 99%

Generalized myasthenia gravis with acetylcholine receptor antibodies: A guidance for treatment

Gilhus,

Andersen,

Andersen

et al. 2024

Euro J of Neurology

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BackgroundGeneralized myasthenia gravis (MG) with antibodies against the acetylcholine receptor is a chronic disease causing muscle weakness. Access to novel treatments warrants authoritative treatment recommendations. The Nordic countries have similar, comprehensive health systems, mandatory health registers, and extensive MG research.MethodsMG experts and patient representatives from the five Nordic countries formed a working group to prepare treatment guidance for MG based on a systematic literature search and consensus meetings.ResultsPyridostigmine represents the first‐line symptomatic treatment, while ambenonium and beta adrenergic agonists are second‐line options. Early thymectomy should be undertaken if a thymoma, and in non‐thymoma patients up to the age of 50–65 years if not obtaining remission on symptomatic treatment. Most patients need immunosuppressive drug treatment. Combining corticosteroids at the lowest possible dose with azathioprine is recommended, rituximab being an alternative first‐line option. Mycophenolate, methotrexate, and tacrolimus represent second‐line immunosuppression. Plasma exchange and intravenous immunoglobulin are used for myasthenic crises and acute exacerbations. Novel complement inhibitors and FcRn blockers are effective and fast‐acting treatments with promising safety profiles. Their use depends on local availability, refunding policies, and cost–benefit analyses. Adapted physical training is recommended. Planning of pregnancies with optimal treatment, information, and awareness of neonatal MG is necessary. Social support and adaptation of work and daily life activities are recommended.ConclusionsSuccessful treatment of MG rests on timely combination of different interventions. Due to spontaneous disease fluctuations, comorbidities, and changes in life conditions, regular long‐term specialized follow‐up is needed. Most patients do reasonably well but there is room for further improvement. Novel treatments are promising, though subject to restricted access due to costs.

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Section: Methodsmentioning

confidence: 99%

Generalized myasthenia gravis with acetylcholine receptor antibodies: A guidance for treatment

Gilhus,

Andersen,

Andersen

et al. 2024

Euro J of Neurology

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Treatment considerations in myasthenia gravis for the pregnant patient

Gilhus

2023

Expert Review of Neurotherapeutics

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Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

Dengsø,

Lindholm,

Herling

et al. 2023

Res Involv Engagem

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Background Over the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited. Objective The aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries. Methods We conducted a scoping review using nine scientific databases and gray literature from 1992–2023. Sources were categorized as empirical or non-empirical. We used the Guidance for Reporting Involvement of Patients and the Public Short Form 2 checklist for reporting of patient and public involvement in healthcare research and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews. Results A total of 56 publications were included, consisting of 39 empirical and 17 non-empirical sources. Gray literature varied among countries and institutions encompassing different types of documents. We found an increase in the number of publications on patient and public involvement in Nordic healthcare research. This was evidenced by the growing number of references and institutional initiatives intended at involving the public, indicating the increasing emphasis on patient and public involvement in Nordic healthcare research. The terminology used to describe patient and public involvement varied over time. However, there has been a gradual narrowing down of terms as the concept of PPI has become more integrated into research practices, particularly with the involvement of funding agencies. Conclusion The utilization of patient and public involvement in Nordic healthcare research has substantially increased, proliferated, and gained widespread acceptance across diverse healthcare domains. The variety of approaches challenged our scoping review in terms of systematic description and impact. Patient and public involvement was applied in one or more research stages using different methodologies and terms. International agreement on terms and definitions is needed for reliable interpretation of the use of patient and public involvement in Nordic healthcare research.

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User Involvement in Myasthenia Gravis Research

Cited by 4 publications

References 37 publications

Generalized myasthenia gravis with acetylcholine receptor antibodies: A guidance for treatment

Generalized myasthenia gravis with acetylcholine receptor antibodies: A guidance for treatment

Treatment considerations in myasthenia gravis for the pregnant patient

Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

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