TY - JOUR
T1 - Patient-reported burden of myasthenia gravis
T2 - baseline results of the international prospective, observational, longitudinal real-world digital study MyRealWorld-MG
AU - Dewilde, Sarah
AU - Philips, Glenn
AU - Paci, Sandra
AU - Beauchamp, Jon
AU - Chiroli, Silvia
AU - Quinn, Casey
AU - Day, Laura
AU - Larkin, Mark
AU - Palace, Jacqueline
AU - Berrih-Aknin, Sonia
AU - Claeys, Kristl G.
AU - Muppidi, Srikanth
AU - Mantegazza, Renato
AU - Saccà, Francesco
AU - Meisel, Andreas
AU - Bassez, Guillaume
AU - Murai, Hiroyuki
AU - Janssen, M. F.
N1 - 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.
PY - 2023/1/31
Y1 - 2023/1/31
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85147186542&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2022-066445
DO - 10.1136/bmjopen-2022-066445
M3 - Article
C2 - 36720569
AN - SCOPUS:85147186542
SN - 2044-6055
VL - 13
JO - BMJ Open
JF - BMJ Open
IS - 1
M1 - e066445
ER -