Evidence map›Paper›PMID 36720569›Full record

Observational studyBMJ open2023

Patient-reported burden of myasthenia gravis: baseline results of the international prospective, observational, longitudinal real-world digital study MyRealWorld-MG.

Sarah Dewilde, Glenn Philips, Sandra Paci, Jon Beauchamp, Silvia Chiroli, Casey Quinn, Laura Day, Mark Larkin, Jacqueline Palace, Sonia Berrih-Aknin and 8 more

Registry-linked trialAbstract readObservational Study
In one paragraph

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 33 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
33citing papers in PubMed, 3 pooled it
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

NCT04176211 completednot on this map

The Impact of Myasthenia Gravis in the Real World

Typeobservational_patient_registrySponsorVitaccess LtdRan2019 to 2024Enrolled2,847ConditionsMyasthenia Gravis
3 · Its place in the literature

Who cites it

33 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
  2. Immunoglobulin for myasthenia gravis.The Cochrane database of systematic reviews · 2025
    Pooled it
  3. Pooled it
  4. Trial
  5. Review
  6. Article
  7. Article
  8. Article
  9. Article
  10. Article
  11. Review
  12. 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 · 2026
    Article
  13. Review
  14. Review
  15. Article
  16. Review
  17. Review
  18. Review
  19. Article
  20. Observational
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

18 authors.

Sarah DewildeServices In Health Economics SHE, Brussels, Belgium sd@she-consulting.be.ORCID 0000-0002-7315-3230
Glenn PhilipsHEOR, argenx, Boston, Massachusetts, USA.
Sandra PaciMarket Access & Patient Advocacy, argenx, Ghent, Belgium.
Jon BeauchampMarket Access & Patient Advocacy, argenx, Ghent, Belgium.
Silvia ChiroliMarket Access EMEA, argenx, Zurich, Switzerland.
Casey QuinnVitaccess, Northampton, Massachusetts, USA.
Laura DayVitaccess, London, UK.
Mark LarkinVitaccess, London, UK.
Jacqueline PalaceClinical Neurology, John Radcliffe Hospital, Oxford, UK.
Sonia Berrih-AkninINSERM, Institute of Myology, Center of Research in Myology, Sorbonne Université, Paris, France.
Kristl G ClaeysDepartment of Neurology, KU Leuven University Hospitals, Leuven, Belgium.
Srikanth MuppidiDepartment of Neurology and Neurosciences, Stanford University, Stanford, California, USA.
Renato MantegazzaFondazione IRCCS, Istituto Nazionale Neurologico Carlo Besta, Milano, Italy.
Francesco SaccàDNSRO Department, University of Naples Federico II, Napoli, Italy.
Andreas MeiselNeurology, Charite Universitatsmedizin Berlin, Berlin, Germany.
Guillaume BassezNeuromuscular Diseases Reference Center, Pitié-Salpêtrière University Hospital, Paris, France.
Hiroyuki MuraiDepartment of Neurology, International University of Health and Welfare, Narita, Japan.
M F JanssenDepartment of Medical Psychology and Psychotherapy, Erasmus University Rotterdam, Rotterdam, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesMyasthenia gravis (MG) is a rare, chronic, autoimmune neuromuscular disease which can affect functional and mental aspects of health and health-related quality of life (HRQoL). This study aims to obtain detailed knowledge of the impact of MG on HRQoL in a broad population from the perspective of the patient.

designProspective, observational, digital, longitudinal real-world study.

settingAdult patients with MG from seven countries (USA, Japan, Germany, UK, Italy, Spain and Canada) downloaded a mobile application onto their phones and entered data about themselves and their MG. OUTCOME MEASURES: Data was collected using the following general and disease-specific patient-reported outcome measurements: EuroQol 5 Domains Health-Related Quality of Life Questionnaire (EQ-5D-5L), Myasthenia Gravis Activities of Daily Living (MG-ADL), Myasthenia Gravis Quality of Life 15-item revised scale (MG-QoL-15r), Hospital Anxiety and Depression Scale (HADS) and Health Utilities Index III (HUI3). Patients were categorised by their self-assessed Myasthenia Gravis Foundation of America (MGFA) class (I-V).

resultsBaseline results of 841 participants (mean age 47 years, 70% women) are reported . The distribution across the MGFA classes was: 13.9%, 31.0%, 38.1%, 15.5% and 1.6% for classes I-V. The MGFA class was a strong predictor of all aspects of HRQoL, measured with disease-specific and with generic instruments. The domains in which patients with MG most frequently mentioned problems were usual activities, anxiety and depression, tiredness, breathing and vision. The mean total MG-ADL Score was positively associated with increasing MGFA classes: 2.7, 4.4, 6.3 and 8.4 for MGFA classes I-IV. Mean baseline EQ-5D-5L utility was also associated with MGFA classes and was 0.817, 0.766, 0.648 and 0.530 for MGFA class I-IV.

conclusionsMG has a large impact on key aspects of health and HRQoL. The impact of this disease increases substantially with increasing disease severity.

Indexed as

Myasthenia GravisQuality of LifeActivities of Daily LivingAdultFemaleHumansMaleMiddle AgedPatient Reported Outcome MeasuresProspective StudiesAdult neurologyNEUROLOGYNeuromuscular disease

Identifiers

PMID36720569
PMCPMC9890761

What OpenQuestion holds

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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.