Evidence map›Paper›PMID 37921955›Full record

Observational studyAdvances in therapy2024

The Burden Patients with Myasthenia Gravis Experience in Terms of Breathing, Fatigue, Sleep, Mental Health, Discomfort and Usual Activities in Comparison to the General Population.

S Dewilde, G Phillips, S Paci, F De Ruyck, N H Tollenaar, M F Janssen

Open access · hybridAbstract readObservational Study
In one paragraph

Observational study in Advances in therapy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
24citing papers in PubMed, 1 pooled it
6.4field-weighted citation impact, top 3% of its field
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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

24 citing papers in PubMed, 1 synthesis or guideline pooled it, 31 citations in OpenAlex.

  1. Pooled it
  2. Trial
  3. Trial
  4. Review
  5. Review
  6. Article
  7. Article
  8. Article
  9. Article
  10. Article
  11. Review
  12. Review
  13. The case of a highly trained TRPV4 related scapuloperoneal spinal muscular atrophy patient: a 5-year follow-up.Acta myologica : myopathies and cardiomyopathies : official journal of the Mediterranean Society of Myology · 2025
    Article
  14. Psychometric benefits of adding bolt-ons to the EQ-5D-5L in populations undergoing minimally invasive cosmetic procedures.The European journal of health economics : HEPAC : health economics in prevention and care · 2025
    Article
  15. Review
  16. Sleep dysfunction in aspirin exacerbated respiratory disease: A prospective cohort study.World journal of otorhinolaryngology - head and neck surgery · 2025
    Article
  17. Article
  18. Article
  19. Article
  20. Article
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

6 authors at 3 institutions in 3 countries.

S DewildeServices in Health Economics (SHE), Rue JG Eggerickx 36, 1150, Woluwe, Brussels, Belgium. sd@she-consulting.be.ORCID 0000-0002-7315-3230
G Phillipsargenx BV, Ghent, Belgium.ORCID 0000-0002-9676-1909
S Paciargenx BV, Ghent, Belgium.
F De Ruyckargenx BV, Ghent, Belgium.
N H TollenaarServices in Health Economics (SHE), Rue JG Eggerickx 36, 1150, Woluwe, Brussels, Belgium.ORCID 0000-0001-9271-5959
M F JanssenSection Medical Psychology and Psychotherapy, Department of Psychiatry, Erasmus MC, Rotterdam, The Netherlands.ORCID 0000-0001-6602-6949
Argenx (Belgium) · BEEgis (France) · FRErasmus MC · NL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionMyasthenia gravis (MG) is a rare neuromuscular disorder marked by a variable combination of weakness of eye, bulbar, respiratory, axial, and limb muscles. This study compared the experience of people with MG regarding breathing, fatigue, sleep, pain/discomfort, mental health, and usual activities with the general population.

methodsThe MyRealWorld-MG digital, multinational study enrolled patients with MG and collected demographics, PROMIS-Dyspnea, PROMIS-Sleep Disturbance, FACIT-Fatigue, EQ-5D-5L, Health Utilities Index (HUI-3), Hospital Anxiety and Depression Scale (HADS), MG-Activities of Daily Living (MG-ADL), and MG-Quality-of-Life (MG-QoL-15r). Comparisons with the general population were based on PROMIS population norms, published literature, or on data from a digital, multinational, observational study which enrolled a representative sample of the general population (POPUP).

resultsIn MyRealWorld-MG (N = 2074), patients experienced higher intensity, frequency, and duration of PROMIS shortness of breath than a US population (p < 0.0001). Patients with MG had higher PROMIS-Sleep Disturbance scores than POPUP (53.7 vs 50.0, p < 0.0001), and 54.9% of patients had clinically severe FACIT-Fatigue scores vs 6.8% in POPUP (p < 0.0001). Among patients with MG, 69.6% and 18.5% had moderate-to-severe HADS-Anxiety and HADS-Depression compared to 20.3% and 6.9% in POPUP (p < 0.001). Statistically significant and strong associations were found between fatigue, sleep, dyspnea, usual activities, and emotions. All outcomes worsened with more severe disease.

conclusionA considerable burden was observed in this comparison of breathing, sleep, fatigue, mental health, and usual activities between patients with MG and the general population, using data from two international studies and published population norms. Even mildly affected patients had significantly worse outcomes than the general population.

Indexed as

Myasthenia GravisSleep Wake DisordersActivities of Daily LivingDyspneaFatigueHumansMental HealthQuality of LifeSleepAnxietyBurdenDepressionDyspneaFatigueHealth-related quality of lifeHRQoLMental healthMyasthenia gravisSleep

Identifiers

PMID37921955
PMCPMC10796601
OpenAlexW4388296107

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

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.