Patient-reported burden of myasthenia gravis: baseline results of the international prospective, observational, longitudinal real-world digital study MyRealWorld-MG
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 perspect...
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| Vydáno v: | BMJ open Ročník 13; číslo 1; s. e066445 |
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| Hlavní autoři: | , , , , , , , , , , , , , , , , , |
| Médium: | Journal Article |
| Jazyk: | angličtina |
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England
British Medical Journal Publishing Group
31.01.2023
BMJ Publishing Group LTD BMJ Publishing Group |
| Edice: | Original research |
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| ISSN: | 2044-6055, 2044-6055 |
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| 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 measuresData 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. |
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| AbstractList | 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.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.Prospective, observational, digital, longitudinal real-world study.DESIGNProspective, observational, digital, longitudinal real-world study.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.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.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).OUTCOME MEASURESData 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).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.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.MG has a large impact on key aspects of health and HRQoL. The impact of this disease increases substantially with increasing disease severity.CONCLUSIONSMG has a large impact on key aspects of health and HRQoL. The impact of this disease increases substantially with increasing disease severity. 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. Prospective, observational, digital, longitudinal real-world study. 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. 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). 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. MG has a large impact on key aspects of health and HRQoL. The impact of this disease increases substantially with increasing disease severity. 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 measuresData 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. 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. |
| Author | Murai, Hiroyuki Saccà, Francesco Berrih-Aknin, Sonia Chiroli, Silvia Claeys, Kristl G Mantegazza, Renato Bassez, Guillaume Janssen, MF Dewilde, Sarah Larkin, Mark Muppidi, Srikanth Beauchamp, Jon Paci, Sandra Meisel, Andreas Day, Laura Palace, Jacqueline Philips, Glenn Quinn, Casey |
| AuthorAffiliation | 4 Market Access EMEA , argenx , Zurich , Switzerland 11 Department of Neurology and Neurosciences , Stanford University , Stanford , California , USA 6 Vitaccess , London , UK 12 Fondazione IRCCS , Istituto Nazionale Neurologico Carlo Besta , Milano , Italy 5 Vitaccess , Northampton , Massachusetts , USA 14 DNSRO Department , University of Naples Federico II , Napoli , Italy 18 Department of Medical Psychology and Psychotherapy , Erasmus University Rotterdam , Rotterdam , The Netherlands 9 Department of Neurology , KU Leuven University Hospitals , Leuven , Belgium 13 Associazione Italiana Miastenia e Malattie Immunodegenerative , Milan , Italy 10 Laboratory for Muscle Diseases and Neuropathies, Department of Neurosciences , KU Leuven , Leuven , Belgium 1 Services In Health Economics SHE , Brussels , Belgium 7 Clinical Neurology , John Radcliffe Hospital , Oxford , UK 15 Neurology , Charite Universitatsmedizin Berlin , Berlin , Germany 17 Department of Neurology , International University of Health |
| AuthorAffiliation_xml | – name: 3 Market Access & Patient Advocacy , argenx , Ghent , Belgium – name: 8 INSERM, Institute of Myology, Center of Research in Myology , Sorbonne Université , Paris , France – name: 10 Laboratory for Muscle Diseases and Neuropathies, Department of Neurosciences , KU Leuven , Leuven , Belgium – name: 5 Vitaccess , Northampton , Massachusetts , USA – name: 13 Associazione Italiana Miastenia e Malattie Immunodegenerative , Milan , Italy – name: 2 HEOR , argenx , Boston , Massachusetts , USA – name: 12 Fondazione IRCCS , Istituto Nazionale Neurologico Carlo Besta , Milano , Italy – name: 14 DNSRO Department , University of Naples Federico II , Napoli , Italy – name: 15 Neurology , Charite Universitatsmedizin Berlin , Berlin , Germany – name: 9 Department of Neurology , KU Leuven University Hospitals , Leuven , Belgium – name: 16 Neuromuscular Diseases Reference Center , Pitié-Salpêtrière University Hospital , Paris , France – name: 11 Department of Neurology and Neurosciences , Stanford University , Stanford , California , USA – name: 4 Market Access EMEA , argenx , Zurich , Switzerland – name: 7 Clinical Neurology , John Radcliffe Hospital , Oxford , UK – name: 17 Department of Neurology , International University of Health and Welfare , Narita , Japan – name: 18 Department of Medical Psychology and Psychotherapy , Erasmus University Rotterdam , Rotterdam , The Netherlands – name: 1 Services In Health Economics SHE , Brussels , Belgium – name: 6 Vitaccess , London , UK |
| Author_xml | – sequence: 1 givenname: Sarah orcidid: 0000-0002-7315-3230 surname: Dewilde fullname: Dewilde, Sarah email: sd@she organization: Services In Health Economics SHE, Brussels, Belgium – sequence: 2 givenname: Glenn surname: Philips fullname: Philips, Glenn organization: HEOR, argenx, Boston, Massachusetts, USA – sequence: 3 givenname: Sandra surname: Paci fullname: Paci, Sandra organization: Market Access & Patient Advocacy, argenx, Ghent, Belgium – sequence: 4 givenname: Jon surname: Beauchamp fullname: Beauchamp, Jon organization: Market Access & Patient Advocacy, argenx, Ghent, Belgium – sequence: 5 givenname: Silvia surname: Chiroli fullname: Chiroli, Silvia organization: Market Access EMEA, argenx, Zurich, Switzerland – sequence: 6 givenname: Casey surname: Quinn fullname: Quinn, Casey organization: Vitaccess, Northampton, Massachusetts, USA – sequence: 7 givenname: Laura surname: Day fullname: Day, Laura organization: Vitaccess, London, UK – sequence: 8 givenname: Mark surname: Larkin fullname: Larkin, Mark organization: Vitaccess, London, UK – sequence: 9 givenname: Jacqueline surname: Palace fullname: Palace, Jacqueline organization: Clinical Neurology, John Radcliffe Hospital, Oxford, UK – sequence: 10 givenname: Sonia surname: Berrih-Aknin fullname: Berrih-Aknin, Sonia organization: INSERM, Institute of Myology, Center of Research in Myology, Sorbonne Université, Paris, France – sequence: 11 givenname: Kristl G surname: Claeys fullname: Claeys, Kristl G organization: Laboratory for Muscle Diseases and Neuropathies, Department of Neurosciences, KU Leuven, Leuven, Belgium – sequence: 12 givenname: Srikanth surname: Muppidi fullname: Muppidi, Srikanth organization: Department of Neurology and Neurosciences, Stanford University, Stanford, California, USA – sequence: 13 givenname: Renato surname: Mantegazza fullname: Mantegazza, Renato organization: Associazione Italiana Miastenia e Malattie Immunodegenerative, Milan, Italy – sequence: 14 givenname: Francesco surname: Saccà fullname: Saccà, Francesco organization: DNSRO Department, University of Naples Federico II, Napoli, Italy – sequence: 15 givenname: Andreas surname: Meisel fullname: Meisel, Andreas organization: Neurology, Charite Universitatsmedizin Berlin, Berlin, Germany – sequence: 16 givenname: Guillaume surname: Bassez fullname: Bassez, Guillaume organization: Neuromuscular Diseases Reference Center, Pitié-Salpêtrière University Hospital, Paris, France – sequence: 17 givenname: Hiroyuki surname: Murai fullname: Murai, Hiroyuki organization: Department of Neurology, International University of Health and Welfare, Narita, Japan – sequence: 18 givenname: MF surname: Janssen fullname: Janssen, MF organization: Department of Medical Psychology and Psychotherapy, Erasmus University Rotterdam, Rotterdam, The Netherlands |
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| DOI | 10.1136/bmjopen-2022-066445 |
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| Keywords | Adult neurology Neuromuscular disease NEUROLOGY |
| Language | English |
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myasthenia gravis: taking the patient’s perspective publication-title: J Neurol doi: 10.1007/s00415-021-10891-1 – ident: 2025101812431629000_13.1.e066445.10 doi: 10.1016/S0003-4975(00)01595-2 – volume: 29 start-page: 2541 year: 2020 ident: 2025101812431629000_13.1.e066445.14 article-title: Does the EQ-5D-5L benefit from extension with a cognitive domain: testing a multi-criteria psychometric strategy in trauma patients publication-title: Qual Life Res doi: 10.1007/s11136-020-02496-4 – ident: 2025101812431629000_13.1.e066445.19 doi: 10.1177/0272989X13480428 – ident: 2025101812431629000_13.1.e066445.25 doi: 10.1111/j.1600-0447.1983.tb09716.x – volume: 414 start-page: 116830 year: 2020 ident: 2025101812431629000_13.1.e066445.28 article-title: Exploring outcomes and characteristics of myasthenia gravis: rationale, aims and design of registry-the EXPLORE-MG registry publication-title: J Neurol Sci doi: 10.1016/j.jns.2020.116830 – volume: 11 year: 2020 ident: 2025101812431629000_13.1.e066445.8 article-title: Outcome measures in clinical trials of patients with myasthenia gravis publication-title: Front Neurol doi: 10.3389/fneur.2020.596382 – ident: 2025101812431629000_13.1.e066445.16 doi: 10.3310/hta18520 – volume: 39 start-page: 393 year: 2019 ident: 2025101812431629000_13.1.e066445.18 article-title: Exploring the impact of adding a respiratory dimension to the EQ-5D-5L publication-title: Med Decis Making doi: 10.1177/0272989X19847983 – volume: 6 year: 2016 ident: 2025101812431629000_13.1.e066445.36 article-title: Fatigue in myasthenia gravis: risk factors and impact on quality of life publication-title: Brain Behav doi: 10.1002/brb3.538 – volume: 10 year: 2021 ident: 2025101812431629000_13.1.e066445.3 article-title: Myasthenia gravis: epidemiology, pathophysiology and clinical manifestations publication-title: J Clin Med doi: 10.3390/jcm10112235 – volume: 60 start-page: 707 year: 2019 ident: 2025101812431629000_13.1.e066445.32 article-title: Cross-sectional analysis of the myasthenia gravis patient registry: disability and treatment publication-title: Muscle Nerve doi: 10.1002/mus.26695 – volume: 54 start-page: 1015 year: 2016 ident: 2025101812431629000_13.1.e066445.24 article-title: International Clinimetric evaluation of the MG-QOL15, resulting in slight revision and subsequent validation of the MG-qol15r publication-title: Muscle Nerve doi: 10.1002/mus.25198 – ident: 2025101812431629000_13.1.e066445.26 doi: 10.1093/occmed/kqu024 – volume: 22 start-page: 50 year: 2019 ident: 2025101812431629000_13.1.e066445.15 article-title: Selecting bolt-on dimensions for the EQ-5D: examining their contribution to health-related quality of life publication-title: Value Health doi: 10.1016/j.jval.2018.07.001 – ident: 2025101812431629000_13.1.e066445.1 doi: 10.1172/JCI29894 – volume: 35 start-page: 77 year: 2017 ident: 2025101812431629000_13.1.e066445.35 article-title: The use of health state utility values in decision models publication-title: Pharmacoeconomics doi: 10.1007/s40273-017-0550-0 |
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| Snippet | ObjectivesMyasthenia gravis (MG) is a rare, chronic, autoimmune neuromuscular disease which can affect functional and mental aspects of health and... Myasthenia gravis (MG) is a rare, chronic, autoimmune neuromuscular disease which can affect functional and mental aspects of health and health-related quality... Objectives Myasthenia gravis (MG) is a rare, chronic, autoimmune neuromuscular disease which can affect functional and mental aspects of health and... |
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| StartPage | e066445 |
| SubjectTerms | Activities of Daily Living Adult Adult neurology Data collection Female Humans Male Mental depression Middle Aged Myasthenia Gravis Neurology Neuromuscular disease Patient Reported Outcome Measures Patients Prospective Studies Quality of Life Questionnaires |
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| Title | Patient-reported burden of myasthenia gravis: baseline results of the international prospective, observational, longitudinal real-world digital study MyRealWorld-MG |
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| Volume | 13 |
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