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Observational Study
. 2024 Jan;41(1):271-291.
doi: 10.1007/s12325-023-02704-w. Epub 2023 Nov 3.

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  1 , G Phillips  2 , S Paci  2 , F De Ruyck  2 , N H Tollenaar  3 , M F Janssen  4
Affiliations
Observational Study

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 et al. Adv Ther. 2024 Jan.

Abstract

Introduction: Myasthenia 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.

Methods: The 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).

Results: In 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.

Conclusion: A 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.

Keywords: Anxiety; Burden; Depression; Dyspnea; Fatigue; HRQoL; Health-related quality of life; Mental health; Myasthenia gravis; Sleep.

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Conflict of interest statement

Sarah Dewilde, the principal investigator of the study, Nafthali H Tollenaar and Mathieu F Janssen have been commissioned by argenx BV and received honoraria to design the study, analyze and report the data. Glenn Phillips, Sandra Paci and Femke De Ruyck are employees of argenx BV, the sponsor of the study.

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