ArticleNeurology and therapy2021
The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis.
Article in Neurology and therapy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 48 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
48 citing papers in PubMed, 1 synthesis or guideline pooled it, 66 citations in OpenAlex.
- Systematic review of the patient burden of generalised myasthenia gravis in Europe, the Middle East, and Africa.BMC neurology · 2024Pooled it
- Evaluation of Sustained Disease Control With Nipocalimab Versus Placebo in the Phase 3 Vivacity-MG3 Study.European journal of neurology · 2026Trial
- Long-term safety, tolerability, and efficacy of subcutaneous efgartigimod PH20 in generalized myasthenia gravis: final results from a phase 3 open-label extension study (ADAPT-SC+).Frontiers in neurology · 2026Trial
- Improvement in Patient-Reported Symptoms of Generalised Myasthenia Gravis With Rozanolixizumab in the Randomised Phase 3 MycarinG Study Using the MG Symptoms PRO.European journal of neurology · 2025Trial
- ADAPT NXT: Fixed Cycles or Every-Other-Week IV Efgartigimod in Generalized Myasthenia Gravis.Annals of clinical and translational neurology · 2025Trial
- Rozanolixizumab in generalized myasthenia gravis: Pooled analysis of the Phase 3 MycarinG study and two open-label extensions.Journal of neuromuscular diseases · 2025Trial
- Improvement of fatigue in generalised myasthenia gravis with zilucoplan.Journal of neurology · 2024Trial
- Treatment Preferences of Patients With Myasthenia Gravis: A Qualitative Study.Muscle & nerve · 2026Article
- Exploring psychosocial experiences in clinically stable generalised Myasthenia Gravis: A thematic analysis.Journal of neuromuscular diseases · 2026Article
- Facilitators and barriers to exercise in autoimmune myasthenia gravis: A cross-sectional survey study.Journal of neuromuscular diseases · 2026Article
- Characterizing and quantifying disease impacts of generalized myasthenia gravis (gMG) in the United States: insights from patient and caregiver interviews and surveys.Journal of patient-reported outcomes · 2026Article
- Patient Perceptions of Needs and Expectations Regarding the Current Management of Myasthenia Gravis: A Biopsychosocial Study.Neurology and therapy · 2026Article
- Economic Evaluation of Thymectomy for the Treatment of Nonthymomatous Myasthenia Gravis.JAMA network open · 2026Article
- Bridging the gap between patient and physician perspectives on management of generalized myasthenia gravis: a Delphi consensus study.Orphanet journal of rare diseases · 2026Article
- Pharmacological and speech-language pathology management of dysphagia in patients with myasthenia gravis.Naunyn-Schmiedeberg's archives of pharmacology · 2026Review
- Patient- and Public-Led Research - How Is It Defined and Practiced: A Scoping Review.Journal of patient experience · 2026Article
- A Delphi consensus on integrating novel therapies into the management of generalized myasthenia gravis.Therapeutic advances in neurological disorders · 2026Article
- Digital assessment in myasthenia gravis: evidence, validation, and a proposed framework for autoimmune heterogeneity, remote monitoring, and clinical endpoints.Frontiers in immunology · 2026Review
- Mental Health Experiences and Challenges Among Individuals with Myasthenia Gravis: Insights from Patient-Centered, Qualitative Analyses.Advances in therapy · 2025Review
- Impact of disease activity on quality of life and EQ-5D-3L score in myasthenia gravis: results from the Swedish MG registry.Journal of neurology · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 4 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionA greater understanding of the reality of living with myasthenia gravis (MG) may improve management and outcomes for patients. However, there is little published data on the patient perspective of how MG impacts life. Our objective was to reveal the lived experience of MG from the patient perspective.
methodsThis analysis was led by an international Patient Council comprising nine individuals living with MG who serve as local/national patient advocates in seven countries (Europe and the United States). Insights into the lived experience of MG were consolidated from three sources (a qualitative research study of 54 people with MG or their carers from seven countries; a previous Patient Council meeting [September 2019]; and a literature review). Insights were prioritised by the Patient Council, discussed during a virtual workshop (August 2020) and articulated in a series of statements organised into domains. Overarching themes that describe the lived experience of MG were identified by the patient authors.
resultsFrom 114 patient insights and supporting quotes, the Patient Council defined 44 summary statements organised into nine domains. Five overarching themes were identified that describe the lived experience of MG. These themes include living with fluctuating and unpredictable symptoms; a constant state of adaptation, continual assessment and trade-offs in all aspects of life; treatment inertia, often resulting in under-treatment; a sense of disconnect with healthcare professionals; and feelings of anxiety, frustration, guilt, anger, loneliness and depression.
conclusionThis patient-driven analysis enriches our understanding of the reality of living with MG from the patient perspective.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.