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, Kristl G. Claeys, Srikanth Muppidi, Renato Mantegazza, Francesco Saccà, Andreas Meisel, Guillaume Bassez, Hiroyuki Murai, M. F. Janssen

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

6 Citations (Scopus)
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Abstract

Objectives Myasthenia 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. Design Prospective, observational, digital, longitudinal real-world study. Setting Adult 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). Results Baseline 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. Conclusions MG has a large impact on key aspects of health and HRQoL. The impact of this disease increases substantially with increasing disease severity.

Original languageEnglish
Article numbere066445
JournalBMJ Open
Volume13
Issue number1
DOIs
Publication statusPublished - 31 Jan 2023

Bibliographical note

Funding Information:
The study is funded by argenx BV, Ghent, Belgium. No grant or award is applicable.

Publisher Copyright:
© 2023 Author(s). Published by BMJ.

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