Observational studyBMJ open2023
Patient-reported impact of myasthenia gravis in the real world: findings from a digital observational survey-based study (MyRealWorld MG).
Observational study in BMJ open, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04176211 (The Impact of Myasthenia Gravis in the Real World), which is not on this map. Cited by 21 papers.
What it found
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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.
The Impact of Myasthenia Gravis in the Real World
Who cites it
21 citing papers in PubMed, 24 citations in OpenAlex.
- Usability and Acceptance of Autoinjector and Prefilled Syringe Devices by Patients with Generalized Myasthenia Gravis in a Human Factors Study.Advances in therapy · 2026Trial
- Are you weary of illness? Coping and existential positioning in life with myasthenia gravis.Medicine, health care, and philosophy · 2026Article
- It's you it's about! Exploring existential aspects on quality of life with myasthenia gravis.Medicine, health care, and philosophy · 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
- Estimating the minimal clinically important difference for the Myasthenia Gravis Quality of Life revised scale (MG-QOL15R).Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Article
- Clinical Impact of High-Dose Corticosteroids on Healthcare Resource Utilization and Steroid-Related Complications in Patients with Myasthenia Gravis in Japan.Neurology and therapy · 2026Article
- The Fiscal Consequences for the Canadian Government of Efgartigimod in the Treatment of Generalized Myasthenia Gravis.Journal of health economics and outcomes research · 2026Article
- Digital assessment in myasthenia gravis: evidence, validation, and a proposed framework for autoimmune heterogeneity, remote monitoring, and clinical endpoints.Frontiers in immunology · 2026Review
- 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
- A Quantitative Study of Factors Influencing Myasthenia Gravis Telehealth Examination Score.Muscle & nerve · 2025Article
- Treatment patterns and impact of glucocorticoids on health outcomes in generalized myasthenia gravis: a retrospective observational study based on the Medical Data Vision database in Japan.Frontiers in neurology · 2025Article
- AI-based thematic exploration to understand patients with myasthenia gravis by serological subtype.Frontiers in neurology · 2025Article
- The study of social participation and its influences on young and middle-aged patients with myasthenia gravis.Frontiers in neurology · 2025Article
- Humanistic burden and medical care patterns of real-world patients with myasthenia gravis in Japan.Frontiers in neurology · 2025Article
- SPOON: an observational, cross-sectional study of perceptions and expectations of adults with generalised myasthenia gravis in France.BMJ open · 2024Observational
- The impact of diagnosis delay on European patients with generalised myasthenia gravis.Annals of clinical and translational neurology · 2024Article
- Patient and care partner perspectives and preferences related to myasthenia gravis treatment: A qualitative study.Health science reports · 2024Article
- Patient perceptions of disease burden and treatment of myasthenia gravis based on sentiment analysis of digital conversations.Scientific reports · 2024Article
- Impact of Ravulizumab on Patient Outcomes and Quality of Life in Generalized Myasthenia Gravis.Patient related outcome measures · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors at 7 institutions in 6 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesThis study aims to explore the impact of myasthenia gravis (MG) - in terms of treatments, side effects, comorbidities, psychological health and work or study- in the real world from a patient perspective. DESIGN AND
participantsThis is a prospective, observational, digital, longitudinal study. Adults diagnosed with MG residing in the USA, Japan, Germany, the UK, Italy, Spain or Canada were eligible to participate in the study. There were no other exclusion criteria. Participants used a bespoke smartphone application to confirm eligibility, provide consent and enter data about their MG into a profile, a tracker to record MG-related events and a series of patient-reported outcome instruments. 1693 participants completed at least 1 survey and were included in this analysis.
resultsResults are presented as a percentage of respondents to each survey question. The study population was largely female (69% of 1586 respondents), with an average age of 49.9 years (SD 14.8). In the previous 12 months, 83.7% of 1412 respondents confirmed that they had received one or more routine treatments for MG, and 67.1% of 255 respondents confirmed that they had experienced a side effect in the previous month. Commonly experienced comorbidities reported by 966 respondents were thyroid problems, hypertension and anxiety, experienced by 37.5%, 31.4% and 28.0% of respondents, respectively.According to 889 respondents to the Hospital Anxiety and Depression Scale survey, 52.7% and 43.2% had a score indicative of at least mild anxiety and mild depression, respectively. Of 257 respondents, 33.0% reported experiencing a work or study impact in the past month.
conclusionsThis analysis of baseline characteristics of the MyRealWorld MG study population indicates that, despite current treatments, patients experience notable burden. Further scheduled analyses will develop a longitudinal picture of MG burden. TRIAL REGISTRATION NUMBER: NCT04176211.
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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.