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...

Ausführliche Beschreibung

Gespeichert in:

Bibliographische Detailangaben
Veröffentlicht in:	BMJ open Jg. 13; H. 1; S. e066445
Hauptverfasser:	Dewilde, Sarah, Philips, Glenn, Paci, Sandra, Beauchamp, Jon, Chiroli, Silvia, Quinn, Casey, Day, Laura, Larkin, Mark, Palace, Jacqueline, Berrih-Aknin, Sonia, Claeys, Kristl G, Muppidi, Srikanth, Mantegazza, Renato, Saccà, Francesco, Meisel, Andreas, Bassez, Guillaume, Murai, Hiroyuki, Janssen, MF
Format:	Journal Article
Sprache:	Englisch
Veröffentlicht:	England British Medical Journal Publishing Group 31.01.2023 BMJ Publishing Group LTD BMJ Publishing Group
Schriftenreihe:	Original research
Schlagworte:	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 United Kingdom > UK Adult neurology Neuromuscular disease NEUROLOGY
ISSN:	2044-6055, 2044-6055
Online-Zugang:	Volltext
Tags:	Tag hinzufügen Keine Tags, Fügen Sie den ersten Tag hinzu!

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.
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
BackLink	https://www.ncbi.nlm.nih.gov/pubmed/36720569$$D View this record in MEDLINE/PubMed
BookMark	eNqFUstu1DAUjVARfdAvQEKW2LBoqO3ETswCCVWlVGoFQiCWlmPfmXrksVM7GTT_w4fikKG0XUA2js5L177nsNjzwUNRvCD4DSEVP-3Wq9CDLymmtMSc1zV7UhxQXNclx4zt3fvfL45TWuH81UwwRp8V-xVvKGZcHBQ_P6vBgh_KCH2IAxjUjdGAR2GB1luVhhvwVqFlVBub3qJOJXDWA4qQRjekSZYlyPoBos9RwSuH-hhSD3qwGzhBoUsQNzvqBLngl3YYjZ2EEZQrf4ToDDI2wxlKmdui6-2XTH2fmPL64nnxdKFcguPdeVR8-3D-9exjefXp4vLs_VXZ5XsOJTWYaCNI0wresK7S7aIShAmz6DipFRecdW3TqpbojFBgijXAW53RzlDTVkfF5ZxrglrJPtq1ilsZlJW_gRCXUsXBageyFYxyo3TTGFZjTgVpq0pVxGgtcNPSnPVuzurHbg1G5zeOyj0Ifch4eyOXYSNFmwM4yQGvdwEx3I6QBrm2SYNzykMYk6RNQ3jFMZnmfvVIugpjXoebVfkJqBBZ9fL-RHej_ClDFlSzQOf9pQiLOwnBcmqd3LVOTq2Tc-uySzxy6bzIad35Wtb9x3s6ezP5d-Z_OX4B2y_xqA
CitedBy_id	crossref_primary_10_1016_j_disamonth_2025_101971 crossref_primary_10_3389_fmed_2025_1652698 crossref_primary_10_1007_s00415_025_13298_4 crossref_primary_10_1136_bmjopen_2024_088813 crossref_primary_10_1016_j_jval_2025_01_006 crossref_primary_10_1038_s41598_025_93464_w crossref_primary_10_1186_s12889_025_23328_5 crossref_primary_10_1111_ene_16463 crossref_primary_10_1007_s12325_023_02437_w crossref_primary_10_1016_j_jns_2025_123493 crossref_primary_10_1186_s12883_024_03869_9 crossref_primary_10_1080_03007995_2025_2497906 crossref_primary_10_1186_s12883_024_03553_y crossref_primary_10_1007_s11136_024_03875_x crossref_primary_10_1016_j_jocn_2023_09_023 crossref_primary_10_1111_ene_16280 crossref_primary_10_1080_03007995_2025_2516147 crossref_primary_10_1136_jnnp_2024_334086 crossref_primary_10_1007_s00415_025_12922_7 crossref_primary_10_1007_s40120_024_00617_6 crossref_primary_10_61679_2003013025
Cites_doi	10.3389/fneur.2020.596382 10.1136/bmjopen-2020-048198 10.3390/jcm10112235 10.1016/j.jval.2013.10.003 10.1177/0272989X19847983 10.1002/mus.25198 10.1002/brb3.538 10.3961/jpmph.16.076 10.1007/s40273-017-0550-0 10.1016/s0022-3999(01)00296-3 10.1007/s00415-021-10891-1 10.1016/s0003-4975(00)01595-2 10.3389/fneur.2020.553626 10.1097/CND.0000000000000301 10.1186/s12955-015-0298-1 10.1016/j.jval.2018.07.001 10.1177/0272989X13480428 10.1002/mus.26695 10.1007/s100720100066 10.1111/j.1600-0447.1983.tb09716.x 10.1172/JCI29894 10.1007/s11136-011-9903-x 10.1186/1477-7525-8-129 10.1002/mus.22140 10.1002/mus.21053 10.5582/irdr.2019.01121 10.1212/wnl.52.7.1487 10.1016/j.jns.2021.118340 10.1016/j.jval.2012.02.008 10.1007/s11136-020-02496-4 10.1093/occmed/kqu024 10.1007/s10072-020-04528-w 10.1016/j.jns.2020.116830 10.25122/jml-2020-0145 10.3310/hta18090 10.1016/S0022-3999(01)00296-3 10.1212/WNL.52.7.1487 10.1016/S0003-4975(00)01595-2 10.3310/hta18520
ContentType	Journal Article
Copyright	Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. 2023 Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ . Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. 2023
Copyright_xml	– notice: Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. – notice: 2023 Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ . Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. – notice: Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. 2023
DBID	9YT ACMMV AAYXX CITATION CGR CUY CVF ECM EIF NPM 3V. 7RV 7X7 7XB 88E 88G 8FI 8FJ 8FK ABUWG AFKRA AZQEC BENPR BTHHO CCPQU DWQXO FYUFA GHDGH GNUQQ K9- K9. KB0 M0R M0S M1P M2M NAPCQ PHGZM PHGZT PIMPY PJZUB PKEHL PPXIY PQEST PQQKQ PQUKI PRINS PSYQQ Q9U 7X8 5PM DOA
DOI	10.1136/bmjopen-2022-066445
DatabaseName	BMJ Open Access Journals BMJ Journals:Open Access CrossRef Medline MEDLINE MEDLINE (Ovid) MEDLINE MEDLINE PubMed ProQuest Central (Corporate) Nursing & Allied Health Database Health & Medical Collection ProQuest Central (purchase pre-March 2016) Medical Database (Alumni Edition) Psychology Database (Alumni) ProQuest Hospital Collection Hospital Premium Collection (Alumni Edition) ProQuest Central (Alumni) (purchase pre-March 2016) ProQuest Central (Alumni) ProQuest Central UK/Ireland ProQuest Central Essentials ProQuest Central BMJ Journals ProQuest One Community College ProQuest Central Health Research Premium Collection Health Research Premium Collection (Alumni) ProQuest Central Student Consumer Health Database ProQuest Health & Medical Complete (Alumni) Nursing & Allied Health Database (Alumni Edition) Family Health Database (Proquest) ProQuest Health & Medical Collection Medical Database Psychology Database Nursing & Allied Health Premium ProQuest Central Premium ProQuest One Academic (New) Publicly Available Content Database ProQuest Health & Medical Research Collection ProQuest One Academic Middle East (New) ProQuest One Health & Nursing ProQuest One Academic Eastern Edition (DO NOT USE) ProQuest One Academic (retired) ProQuest One Academic UKI Edition ProQuest Central China ProQuest One Psychology ProQuest Central Basic MEDLINE - Academic PubMed Central (Full Participant titles) DOAJ Directory of Open Access Journals
DatabaseTitle	CrossRef MEDLINE Medline Complete MEDLINE with Full Text PubMed MEDLINE (Ovid) Publicly Available Content Database ProQuest One Psychology ProQuest Central Student ProQuest One Academic Middle East (New) ProQuest Central Essentials ProQuest Health & Medical Complete (Alumni) ProQuest Central (Alumni Edition) ProQuest One Community College ProQuest One Health & Nursing ProQuest Family Health (Alumni Edition) ProQuest Central China ProQuest Central ProQuest Health & Medical Research Collection Health Research Premium Collection Health and Medicine Complete (Alumni Edition) ProQuest Central Korea Health & Medical Research Collection ProQuest Central (New) ProQuest Medical Library (Alumni) ProQuest Central Basic ProQuest Family Health ProQuest One Academic Eastern Edition ProQuest Nursing & Allied Health Source ProQuest Hospital Collection Health Research Premium Collection (Alumni) ProQuest Psychology Journals (Alumni) ProQuest Hospital Collection (Alumni) Nursing & Allied Health Premium ProQuest Health & Medical Complete ProQuest Medical Library ProQuest Psychology Journals ProQuest One Academic UKI Edition BMJ Journals ProQuest Nursing & Allied Health Source (Alumni) ProQuest One Academic ProQuest One Academic (New) ProQuest Central (Alumni) MEDLINE - Academic
DatabaseTitleList	MEDLINE - Academic MEDLINE Publicly Available Content Database
Database_xml	– sequence: 1 dbid: DOA name: DOAJ Directory of Open Access Journals url: https://www.doaj.org/ sourceTypes: Open Website – sequence: 2 dbid: NPM name: PubMed url: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed sourceTypes: Index Database – sequence: 3 dbid: 7RV name: Nursing & Allied Health Database url: https://search.proquest.com/nahs sourceTypes: Aggregation Database
DeliveryMethod	fulltext_linktorsrc
Discipline	Medicine
EISSN	2044-6055
ExternalDocumentID	oai_doaj_org_article_89526dac77d5406291833a31dcc90782 PMC9890761 36720569 10_1136_bmjopen_2022_066445 bmjopen
Genre	Research Support, Non-U.S. Gov't Journal Article Observational Study
GeographicLocations	United Kingdom--UK
GeographicLocations_xml	– name: United Kingdom--UK
GrantInformation_xml	– fundername: Argenx grantid: N/A funderid: http://dx.doi.org/10.13039/100018748 – fundername: ; grantid: N/A
GroupedDBID	--- 4.4 53G 5VS 7RV 7X7 7~R 88E 8FI 8FJ 9YT ABUWG ACGFS ACMMV ADBBV AENEX AFKRA ALIPV ALMA_UNASSIGNED_HOLDINGS AOIJS AZQEC BAWUL BCNDV BENPR BKNYI BPHCQ BTFSW BTHHO CCPQU DIK DWQXO EBS FYUFA GNUQQ GROUPED_DOAJ GX1 H13 HMCUK HYE HZ~ K9- KQ8 M0R M1P M2M M48 M~E NAPCQ O9- OK1 PGMZT PHGZT PIMPY PQQKQ PROAC PSQYO PSYQQ RHI RMJ RPM UKHRP AAYXX ADRAZ AFFHD BVXVI CITATION EJD PHGZM PJZUB PPXIY 3V. CGR CUY CVF ECM EIF NPM RHF 7XB 8FK K9. PKEHL PQEST PQUKI PRINS Q9U 7X8 5PM
ID	FETCH-LOGICAL-b605t-2d01cd91789675b3c8f39159dfb614a6965b878a81cfb62e5a57e68c5b8bd2d83
IEDL.DBID	BENPR
ISICitedReferencesCount	27
ISICitedReferencesURI	http://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=Summon&SrcAuth=ProQuest&DestLinkType=CitingArticles&DestApp=WOS_CPL&KeyUT=001003423800017&url=https%3A%2F%2Fcvtisr.summon.serialssolutions.com%2F%23%21%2Fsearch%3Fho%3Df%26include.ft.matches%3Dt%26l%3Dnull%26q%3D
ISSN	2044-6055
IngestDate	Mon Nov 10 04:34:34 EST 2025 Tue Nov 04 02:06:41 EST 2025 Sun Nov 09 12:18:37 EST 2025 Tue Oct 07 07:14:21 EDT 2025 Thu Jan 02 22:54:55 EST 2025 Tue Nov 18 22:31:46 EST 2025 Sat Nov 29 07:04:47 EST 2025 Thu Apr 24 22:50:40 EDT 2025
IsDoiOpenAccess	true
IsOpenAccess	true
IsPeerReviewed	true
IsScholarly	true
Issue	1
Keywords	Adult neurology Neuromuscular disease NEUROLOGY
Language	English
License	This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/. Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
LinkModel	DirectLink
MergedId	FETCHMERGED-LOGICAL-b605t-2d01cd91789675b3c8f39159dfb614a6965b878a81cfb62e5a57e68c5b8bd2d83
Notes	Original research ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 14 ObjectType-Article-2 ObjectType-Undefined-1 ObjectType-Feature-3 content type line 23
ORCID	0000-0002-7315-3230
OpenAccessLink	https://www.proquest.com/docview/2771159299?pq-origsite=%requestingapplication%
PMID	36720569
PQID	2771159299
PQPubID	2040975
ParticipantIDs	doaj_primary_oai_doaj_org_article_89526dac77d5406291833a31dcc90782 pubmedcentral_primary_oai_pubmedcentral_nih_gov_9890761 proquest_miscellaneous_2771636018 proquest_journals_2771159299 pubmed_primary_36720569 crossref_primary_10_1136_bmjopen_2022_066445 crossref_citationtrail_10_1136_bmjopen_2022_066445 bmj_journals_10_1136_bmjopen_2022_066445
PublicationCentury	2000
PublicationDate	2023-01-31
PublicationDateYYYYMMDD	2023-01-31
PublicationDate_xml	– month: 01 year: 2023 text: 2023-01-31 day: 31
PublicationDecade	2020
PublicationPlace	England
PublicationPlace_xml	– name: England – name: London – name: BMA House, Tavistock Square, London, WC1H 9JR
PublicationSeriesTitle	Original research
PublicationTitle	BMJ open
PublicationTitleAbbrev	BMJ Open
PublicationTitleAlternate	BMJ Open
PublicationYear	2023
Publisher	British Medical Journal Publishing Group BMJ Publishing Group LTD BMJ Publishing Group
Publisher_xml	– name: British Medical Journal Publishing Group – name: BMJ Publishing Group LTD – name: BMJ Publishing Group
References	Bjelland, Dahl, Haug (R27) 2002; 52 Antonini, Habetswallner, Inghilleri (R29) 2021; 429 Geraerds, Bonsel, Polinder (R14) 2020; 29 Cutter, Xin, Aban (R32) 2019; 60 Muppidi, Wolfe, Conaway (R21) 2011; 44 Harris, Allman, Sheffield (R2) 2020; 22 Jaretzki, Barohn, Ernstoff (R10) 2000; 70 Ara, Brazier, Zouraq (R35) 2017; 35 Szczudlik, Sobieszczuk, Szyluk (R31) 2020; 11 Conti-Fine, Milani, Kaminski (R1) 2006; 116 Berrih-Aknin, Claeys, Law (R9) 2021; 11 Bubuioc, Kudebayeva, Turuspekova (R4) 2021; 14 Thomsen, Andersen (R8) 2020; 11 Herdman, Gudex, Lloyd (R11) 2011; 20 Burns, Sadjadi, Utsugisawa (R24) 2016; 54 Wolfe, Herbelin, Nations (R22) 1999; 52 Hoogendoorn, Oppe, Boland (R18) 2019; 39 Stern (R26) 2014; 64 Finch, Brazier, Mukuria (R15) 2019; 22 Vitturi, Kim, Mitre (R34) 2021; 42 Dresser, Wlodarski, Rezania (R3) 2021; 10 Yang, Brazier, Tsuchiya (R19) 2014; 34 Twork, Wiesmeth, Klewer (R6) 2010; 8 van Hout, Janssen, Feng (R13) 2012; 15 Kim, Jo, Ock (R17) 2017; 50 Longworth, Yang, Young (R16) 2014; 18 Padua, Evoli, Aprile (R7) 2001; 22 Swinburn, Lloyd, Boye (R20) 2013; 16 Anil, Kumar, Alaparthi (R28) 2020; 414 Garzón-Orjuela, van der Werf, Prieto-Pinto (R5) 2019; 8 Hoffmann, Ramm, Grittner (R36) 2016; 6 Lehnerer, Jacobi, Schilling (R33) 2022; 269 Burns, Conaway, Cutter (R23) 2008; 38 Zigmond, Snaith (R25) 1983; 67 Boldingh, Dekker, Maniaol (R30) 2015; 13 Boldingh (2025101812431629000_13.1.e066445.30) 2015; 13 Garzón-Orjuela (2025101812431629000_13.1.e066445.5) 2019; 8 2025101812431629000_13.1.e066445.27 Twork (2025101812431629000_13.1.e066445.6) 2010; 8 Padua (2025101812431629000_13.1.e066445.7) 2001; 22 Berrih-Aknin (2025101812431629000_13.1.e066445.9) 2021; 11 Finch (2025101812431629000_13.1.e066445.15) 2019; 22 2025101812431629000_13.1.e066445.22 Szczudlik (2025101812431629000_13.1.e066445.31) 2020; 11 2025101812431629000_13.1.e066445.23 2025101812431629000_13.1.e066445.26 2025101812431629000_13.1.e066445.25 2025101812431629000_13.1.e066445.1 Kim (2025101812431629000_13.1.e066445.17) 2017; 50 Vitturi (2025101812431629000_13.1.e066445.34) 2021; 42 Bubuioc (2025101812431629000_13.1.e066445.4) 2021; 14 2025101812431629000_13.1.e066445.16 2025101812431629000_13.1.e066445.19 Dresser (2025101812431629000_13.1.e066445.3) 2021; 10 Burns (2025101812431629000_13.1.e066445.24) 2016; 54 Antonini (2025101812431629000_13.1.e066445.29) 2021; 429 Ara (2025101812431629000_13.1.e066445.35) 2017; 35 Cutter (2025101812431629000_13.1.e066445.32) 2019; 60 2025101812431629000_13.1.e066445.11 Anil (2025101812431629000_13.1.e066445.28) 2020; 414 2025101812431629000_13.1.e066445.10 2025101812431629000_13.1.e066445.13 Swinburn (2025101812431629000_13.1.e066445.20) 2013; 16 2025101812431629000_13.1.e066445.12 Geraerds (2025101812431629000_13.1.e066445.14) 2020; 29 Hoffmann (2025101812431629000_13.1.e066445.36) 2016; 6 Harris (2025101812431629000_13.1.e066445.2) 2020; 22 Lehnerer (2025101812431629000_13.1.e066445.33) 2022; 269 Hoogendoorn (2025101812431629000_13.1.e066445.18) 2019; 39 Thomsen (2025101812431629000_13.1.e066445.8) 2020; 11 Muppidi (2025101812431629000_13.1.e066445.21) 2011; 44
References_xml	– volume: 11 year: 2020 ident: R8 article-title: Outcome measures in clinical trials of patients with myasthenia gravis publication-title: Front Neurol doi: 10.3389/fneur.2020.596382 – volume: 11 year: 2021 ident: R9 article-title: Patient-reportedimpact of myasthenia gravis in the real world: protocol for a digital observational study (myrealworld Mg) publication-title: BMJ Open doi: 10.1136/bmjopen-2020-048198 – volume: 10 year: 2021 ident: R3 article-title: Myasthenia gravis: epidemiology, pathophysiology and clinical manifestations publication-title: J Clin Med doi: 10.3390/jcm10112235 – volume: 16 start-page: 1156 year: 2013 ident: R20 article-title: Development of a disease-specific version of the EQ-5D-5L for use in patients suffering from psoriasis: lessons learned from a feasibility study in the UK publication-title: Value Health doi: 10.1016/j.jval.2013.10.003 – volume: 39 start-page: 393 year: 2019 ident: R18 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: 54 start-page: 1015 year: 2016 ident: R24 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 – volume: 6 year: 2016 ident: R36 article-title: Fatigue in myasthenia gravis: risk factors and impact on quality of life publication-title: Brain Behav doi: 10.1002/brb3.538 – volume: 50 start-page: 361 year: 2017 ident: R17 article-title: Exploratory study of dimensions of health-related quality of life in the general population of South Korea publication-title: J Prev Med Public Health doi: 10.3961/jpmph.16.076 – volume: 35 start-page: 77 year: 2017 ident: R35 article-title: The use of health state utility values in decision models publication-title: Pharmacoeconomics doi: 10.1007/s40273-017-0550-0 – volume: 52 start-page: 69 year: 2002 ident: R27 article-title: The validity of the hospital anxiety and depression scale. An updated literature review publication-title: J Psychosom Res doi: 10.1016/s0022-3999(01)00296-3 – volume: 269 start-page: 3050 year: 2022 ident: R33 article-title: Burden of disease in myasthenia gravis: taking the patient’s perspective publication-title: J Neurol doi: 10.1007/s00415-021-10891-1 – volume: 70 start-page: 327 year: 2000 ident: R10 article-title: Myasthenia gravis: recommendations for clinical research standards. Task force of the medical scientific advisory board of the myasthenia gravis foundation of America publication-title: Ann Thorac Surg doi: 10.1016/s0003-4975(00)01595-2 – volume: 11 year: 2020 ident: R31 article-title: Determinants of quality of life in myasthenia gravis patients publication-title: Front Neurol doi: 10.3389/fneur.2020.553626 – volume: 22 start-page: 11 year: 2020 ident: R2 article-title: Longitudinal analysis of disease burden in refractory and nonrefractory generalized myasthenia gravis in the United States publication-title: J Clin Neuromuscul Dis doi: 10.1097/CND.0000000000000301 – volume: 13 year: 2015 ident: R30 article-title: An up-date on health-related quality of life in myasthenia gravis-results from population based cohorts publication-title: Health Qual Life Outcomes doi: 10.1186/s12955-015-0298-1 – volume: 22 start-page: 50 year: 2019 ident: R15 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 – volume: 34 start-page: 42 year: 2014 ident: R19 article-title: Effect of adding a sleep dimension to the EQ-5D descriptive system: a “bolt-on” experiment publication-title: Med Decis Making doi: 10.1177/0272989X13480428 – volume: 60 start-page: 707 year: 2019 ident: R32 article-title: Cross-sectional analysis of the myasthenia gravis patient registry: disability and treatment publication-title: Muscle Nerve doi: 10.1002/mus.26695 – volume: 22 start-page: 363 year: 2001 ident: R7 article-title: Health-related quality of life in patients with myasthenia gravis and the relationship between patient-oriented assessment and conventional measurements publication-title: Neurol Sci doi: 10.1007/s100720100066 – volume: 67 start-page: 361 year: 1983 ident: R25 article-title: The hospital anxiety and depression scale publication-title: Acta Psychiatr Scand doi: 10.1111/j.1600-0447.1983.tb09716.x – volume: 116 start-page: 2843 year: 2006 ident: R1 article-title: Myasthenia gravis: past, present, and future publication-title: J Clin Invest doi: 10.1172/JCI29894 – volume: 20 start-page: 1727 year: 2011 ident: R11 article-title: Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L) publication-title: Qual Life Res doi: 10.1007/s11136-011-9903-x – volume: 8 year: 2010 ident: R6 article-title: Quality of life and life circumstances in German myasthenia gravis patients publication-title: Health Qual Life Outcomes doi: 10.1186/1477-7525-8-129 – volume: 44 start-page: 727 year: 2011 ident: R21 article-title: MG-ADL: still a relevant outcome measure publication-title: Muscle Nerve doi: 10.1002/mus.22140 – volume: 38 start-page: 957 year: 2008 ident: R23 article-title: Less is more, or almost as much: a 15-item quality-of-life instrument for myasthenia gravis publication-title: Muscle Nerve doi: 10.1002/mus.21053 – volume: 8 start-page: 231 year: 2019 ident: R5 article-title: Quality of life in refractory generalized myasthenia gravis: a rapid review of the literature publication-title: Intractable Rare Dis Res doi: 10.5582/irdr.2019.01121 – volume: 52 start-page: 1487 year: 1999 ident: R22 article-title: Myasthenia gravis activities of daily living profile publication-title: Neurology doi: 10.1212/wnl.52.7.1487 – volume: 429 start-page: 118340 year: 2021 ident: R29 article-title: Estimation of myasthenia gravis prevalence in italy using real-world data publication-title: J Neurol Sci doi: 10.1016/j.jns.2021.118340 – volume: 15 start-page: 708 year: 2012 ident: R13 article-title: Interim scoring for the EQ-5D-5L: mapping the EQ-5D-5L to EQ-5D-3L value sets publication-title: Value Health doi: 10.1016/j.jval.2012.02.008 – volume: 29 start-page: 2541 year: 2020 ident: R14 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 – volume: 64 start-page: 393 year: 2014 ident: R26 article-title: The hospital anxiety and depression scale publication-title: Occup Med (Lond) doi: 10.1093/occmed/kqu024 – volume: 42 start-page: 167 year: 2021 ident: R34 article-title: Social, professional and neuropsychiatric outcomes in patients with myasthenia gravis publication-title: Neurol Sci doi: 10.1007/s10072-020-04528-w – volume: 414 start-page: 116830 year: 2020 ident: R28 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: 14 start-page: 7 year: 2021 ident: R4 article-title: The epidemiology of myasthenia gravis publication-title: J Med Life doi: 10.25122/jml-2020-0145 – volume: 18 start-page: 1 year: 2014 ident: R16 article-title: Use of generic and condition-specific measures of health-related quality of life in NICE decision-making: a systematic review, statistical modelling and survey publication-title: Health Technol Assess doi: 10.3310/hta18090 – volume: 50 start-page: 361 year: 2017 ident: 2025101812431629000_13.1.e066445.17 article-title: Exploratory study of dimensions of health-related quality of life in the general population of South Korea publication-title: J Prev Med Public Health doi: 10.3961/jpmph.16.076 – ident: 2025101812431629000_13.1.e066445.27 doi: 10.1016/S0022-3999(01)00296-3 – volume: 14 start-page: 7 year: 2021 ident: 2025101812431629000_13.1.e066445.4 article-title: The epidemiology of myasthenia gravis publication-title: J Med Life doi: 10.25122/jml-2020-0145 – ident: 2025101812431629000_13.1.e066445.11 doi: 10.1007/s11136-011-9903-x – volume: 11 year: 2021 ident: 2025101812431629000_13.1.e066445.9 article-title: Patient-reportedimpact of myasthenia gravis in the real world: protocol for a digital observational study (myrealworld Mg) publication-title: BMJ Open doi: 10.1136/bmjopen-2020-048198 – volume: 44 start-page: 727 year: 2011 ident: 2025101812431629000_13.1.e066445.21 article-title: MG-ADL: still a relevant outcome measure publication-title: Muscle Nerve doi: 10.1002/mus.22140 – ident: 2025101812431629000_13.1.e066445.23 doi: 10.1002/mus.21053 – volume: 22 start-page: 363 year: 2001 ident: 2025101812431629000_13.1.e066445.7 article-title: Health-related quality of life in patients with myasthenia gravis and the relationship between patient-oriented assessment and conventional measurements publication-title: Neurol Sci doi: 10.1007/s100720100066 – volume: 8 start-page: 231 year: 2019 ident: 2025101812431629000_13.1.e066445.5 article-title: Quality of life in refractory generalized myasthenia gravis: a rapid review of the literature publication-title: Intractable Rare Dis Res doi: 10.5582/irdr.2019.01121 – ident: 2025101812431629000_13.1.e066445.22 doi: 10.1212/WNL.52.7.1487 – volume: 11 year: 2020 ident: 2025101812431629000_13.1.e066445.31 article-title: Determinants of quality of life in myasthenia gravis patients publication-title: Front Neurol doi: 10.3389/fneur.2020.553626 – volume: 22 start-page: 11 year: 2020 ident: 2025101812431629000_13.1.e066445.2 article-title: Longitudinal analysis of disease burden in refractory and nonrefractory generalized myasthenia gravis in the United States publication-title: J Clin Neuromuscul Dis doi: 10.1097/CND.0000000000000301 – volume: 13 year: 2015 ident: 2025101812431629000_13.1.e066445.30 article-title: An up-date on health-related quality of life in myasthenia gravis-results from population based cohorts publication-title: Health Qual Life Outcomes doi: 10.1186/s12955-015-0298-1 – volume: 8 year: 2010 ident: 2025101812431629000_13.1.e066445.6 article-title: Quality of life and life circumstances in German myasthenia gravis patients publication-title: Health Qual Life Outcomes doi: 10.1186/1477-7525-8-129 – ident: 2025101812431629000_13.1.e066445.13 doi: 10.1016/j.jval.2012.02.008 – volume: 429 start-page: 118340 year: 2021 ident: 2025101812431629000_13.1.e066445.29 article-title: Estimation of myasthenia gravis prevalence in italy using real-world data publication-title: J Neurol Sci doi: 10.1016/j.jns.2021.118340 – volume: 42 start-page: 167 year: 2021 ident: 2025101812431629000_13.1.e066445.34 article-title: Social, professional and neuropsychiatric outcomes in patients with myasthenia gravis publication-title: Neurol Sci doi: 10.1007/s10072-020-04528-w – ident: 2025101812431629000_13.1.e066445.12 – volume: 16 start-page: 1156 year: 2013 ident: 2025101812431629000_13.1.e066445.20 article-title: Development of a disease-specific version of the EQ-5D-5L for use in patients suffering from psoriasis: lessons learned from a feasibility study in the UK publication-title: Value Health doi: 10.1016/j.jval.2013.10.003 – volume: 269 start-page: 3050 year: 2022 ident: 2025101812431629000_13.1.e066445.33 article-title: Burden of disease in 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
SSID	ssj0000459552
Score	2.4578574
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...
SourceID	doaj pubmedcentral proquest pubmed crossref bmj
SourceType	Open Website Open Access Repository Aggregation Database Index Database Enrichment Source Publisher
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
SummonAdditionalLinks	– databaseName: BMJ Journals dbid: RMJ link: http://cvtisr.summon.serialssolutions.com/2.0.0/link/0/eLvHCXMwnV1Jb9UwEB61BVW9sEMDBRmJA4eXvpfVNjdAFIT0qqoCqbfIW0pQmlRvQer_4Ycy4yz0IVQhTlHsiRXbY883Xr4BeJUhpHBKqNApTQ5K6XBIcR66SOXou82S0hgfbIIfH4uzM3myBdFwF0ZffKewUYf47G40EEdTs5pGyTSaOrSPaZod0sr0Ntwi14YU-XT-eVxWQYQiMx9nJ56laYhgPeu5hqIkH0pH1UAXrCtsD3aTnMeIAxBkbqPAhoHyPP5_A59_nqG8ZpSO7v5Hde7BnR6BsredytyHLdc8gN15v8f-EH6edFSrYbed4CzT_qoDa0t2caWWRJdQKUZxi6rlG0ZmkKAqQ799Xa-WJIYirLq-1MiwZsOdzglr9bgUrOoJq1uKmbS2FJ8LS1F16Glcma3OKaIJ8wy4bH51iln-7E84__gIvh59-PL-U9jHcgg19sEqjO0sMhbVQEh0UXRiREnU9NKWGgGCymWeacGFEpHBlNhlKuMuFwZTtY2tSB7DTtM2bh-YjymqI40FiFSnWmq0N1JrxDqliUsbwGts7qIfi8vCuzlJXvR9UVDnF13TBxAPfV2YnhOdQnPUN380GT-67ChBbhZ_R0o0ihKft09oF-dFPz0UQmZxbpXh3CKEzmOJM22iksgaIwnEBXAwqODvisWcI55HfCsDeDlm4_RAez6qce26kyFKuEgE8KTT2PFPBr0PgG_o8savbuY01TdPQS6FpAWwp__e1M9gD9_o7B6a_QPYWS3W7jncNj9W1XLxwg_iXzdYSTc priority: 102 providerName: BMJ Publishing Group Ltd – databaseName: DOAJ Directory of Open Access Journals dbid: DOA link: http://cvtisr.summon.serialssolutions.com/2.0.0/link/0/eLvHCXMwrV1Lb9QwELagQogLanmGPmQkDhw2auNs_OitrVq4bFUhkHqL_AqkShPU7CL1__BDO2Nnwy6qyoWrPbYczzgz48f3EfKhgJDCa6lTrw0mKJWHJSVE6jPNIXc7yCtrA9mEOD-Xl5fqYoXqC--ERXjgOHH7UhWMO22FcBBccKbABnOdZ85ahe4N_74Q9awkU-EfPC1UUbABZijL-b65vkI-KrAKyL7Az07xAdNjKF1zSAG3_75g8-87kytO6GyTPB-iR3oUR71FHvn2BXk6G87HX5LfFxEmNY1HAd5RE54p0K6i17e6R6iDWlPkHKr7Q4ouDMNMCjn3opn3KAYitF7dJqQwyuV7zAntzLiNq5sJbTrkO1o45NaCXnSTBghW6urvyEZCA3otnd1-gapwbyedfXpFvp2dfj35nA48DKmBZGeeMneQWQcqlArSC5NbWSGsvHKVAeeuueKFkUJqmVkoYb7QhfBcWig1jjmZvyYbbdf6t4QGPlCTGehATs3UKAO-QhkDiqwsq1xCPoJKymEd9WVIUXJeDtorUXtl1F5C2FJvpR3wzJFWo3m40WRs9DPCeTwsfowGMYoiFncoAAstBwst_2WhCdlZmtOfD2NCQCwOsalKyPuxGpY2ntfo1neLKINwbplMyJtofeNIci4YxK7QWqzZ5dpQ12va-keAD1dS4ebVu__xbdvkGUwX3sgDZ75DNuY3C79Lnthf87q_2Qtr8g763T6I priority: 102 providerName: Directory of Open Access Journals
Title	Patient-reported burden of myasthenia gravis: baseline results of the international prospective, observational, longitudinal real-world digital study MyRealWorld-MG
URI	https://bmjopen.bmj.com/content/13/1/e066445.full https://www.ncbi.nlm.nih.gov/pubmed/36720569 https://www.proquest.com/docview/2771159299 https://www.proquest.com/docview/2771636018 https://pubmed.ncbi.nlm.nih.gov/PMC9890761 https://doaj.org/article/89526dac77d5406291833a31dcc90782
Volume	13
WOSCitedRecordID	wos001003423800017&url=https%3A%2F%2Fcvtisr.summon.serialssolutions.com%2F%23%21%2Fsearch%3Fho%3Df%26include.ft.matches%3Dt%26l%3Dnull%26q%3D
hasFullText	1
inHoldings	1
isFullTextHit
isPrint
journalDatabaseRights	– providerCode: PRVADZ databaseName: BMJ Journals customDbUrl: eissn: 2044-6055 dateEnd: 99991231 omitProxy: false ssIdentifier: ssj0000459552 issn: 2044-6055 databaseCode: RMJ dateStart: 20110101 isFulltext: true titleUrlDefault: http://www.bmj.com/thebmj providerName: BMJ Publishing Group Ltd – providerCode: PRVAON databaseName: DOAJ Directory of Open Access Journals customDbUrl: eissn: 2044-6055 dateEnd: 99991231 omitProxy: false ssIdentifier: ssj0000459552 issn: 2044-6055 databaseCode: DOA dateStart: 20110101 isFulltext: true titleUrlDefault: https://www.doaj.org/ providerName: Directory of Open Access Journals – providerCode: PRVHPJ databaseName: ROAD: Directory of Open Access Scholarly Resources customDbUrl: eissn: 2044-6055 dateEnd: 99991231 omitProxy: false ssIdentifier: ssj0000459552 issn: 2044-6055 databaseCode: M~E dateStart: 20110101 isFulltext: true titleUrlDefault: https://road.issn.org providerName: ISSN International Centre – providerCode: PRVPQU databaseName: Family Health Database (Proquest) customDbUrl: eissn: 2044-6055 dateEnd: 99991231 omitProxy: false ssIdentifier: ssj0000459552 issn: 2044-6055 databaseCode: M0R dateStart: 20110101 isFulltext: true titleUrlDefault: https://search.proquest.com/familyhealth providerName: ProQuest – providerCode: PRVPQU databaseName: Health & Medical Collection customDbUrl: eissn: 2044-6055 dateEnd: 99991231 omitProxy: false ssIdentifier: ssj0000459552 issn: 2044-6055 databaseCode: 7X7 dateStart: 20110101 isFulltext: true titleUrlDefault: https://search.proquest.com/healthcomplete providerName: ProQuest – providerCode: PRVPQU databaseName: Nursing & Allied Health Database customDbUrl: eissn: 2044-6055 dateEnd: 99991231 omitProxy: false ssIdentifier: ssj0000459552 issn: 2044-6055 databaseCode: 7RV dateStart: 20110101 isFulltext: true titleUrlDefault: https://search.proquest.com/nahs providerName: ProQuest – providerCode: PRVPQU databaseName: ProQuest Central customDbUrl: eissn: 2044-6055 dateEnd: 99991231 omitProxy: false ssIdentifier: ssj0000459552 issn: 2044-6055 databaseCode: BENPR dateStart: 20110101 isFulltext: true titleUrlDefault: https://www.proquest.com/central providerName: ProQuest – providerCode: PRVPQU databaseName: Psychology Database customDbUrl: eissn: 2044-6055 dateEnd: 99991231 omitProxy: false ssIdentifier: ssj0000459552 issn: 2044-6055 databaseCode: M2M dateStart: 20110101 isFulltext: true titleUrlDefault: https://www.proquest.com/psychology providerName: ProQuest – providerCode: PRVPQU databaseName: Publicly Available Content Database customDbUrl: eissn: 2044-6055 dateEnd: 99991231 omitProxy: false ssIdentifier: ssj0000459552 issn: 2044-6055 databaseCode: PIMPY dateStart: 20110101 isFulltext: true titleUrlDefault: http://search.proquest.com/publiccontent providerName: ProQuest
link	http://cvtisr.summon.serialssolutions.com/2.0.0/link/0/eLvHCXMwpV1bb9MwFLZohxAv3McKozISDzw0WpM0sc0LYmjjIqWqKkDlKfItI6hrtqZF2v_hh3KO42YrQn3hxWp9iZz42Odi-_sIeZWASWEll4GVCh2UwsKUYiywoUzBdxvGhdaObIKNx3w2ExMfcKv9scrNmugWalNpjJEfRYyB8QLKXLy9uAyQNQp3Vz2FRofsIVLZqEv2jk_Gk2kbZQGDRSRJ5OGGwjg9Uuc_kZcKpAO8MNC3I7zI1IHcLcXk8Pv_ZXT-fXbyhjI6vf-_r_GA3PNmKH3XyM1DcssuHpE7md9of0x-Txq81aDZU7CGKnffgVYFPb-SNWImlJIieVFZv6GoC9FepeC8r-erGqtBFVrejDdS6OrmYueAVqqNB8v5gM4rJE5aGyTpgqfIeeCwXKkpz5DWhDoYXJpdTaHIHQAKsg9PyNfTky_vPwae0CFQ4DWtgsgMQ21AFrgAP0XFmheITy9MocBKkKlIE8UZlzzUkBPZRCbMplxDrjKR4fE-6S6qhT0g1BGLqlDBA_hIjZRQoHSEUmDwFDoqTI-8hjHN_YSsc-frxGnuhz_H4c-b4e-RaDPwufbA6MjPMd_daNA2umhwQXZXP0aJaqsiqLfLqJZnuV8jci6SKDVSM2bAjk4jActtLOPQaC3QkuuRw41MXb_YtUD1yMu2GNYI3PiRC1utmzqICxfyHnnaiG_bkzhlERjB0JptCfZWV7dLFuUPh0MuuMAo2LPd3XpO7sKHwEN7oO8PSXe1XNsX5Lb-tSrrZZ902PQbpjPmUt73U7jvoiOQZkP8nUUZlEw-ZZPv8G-aff4Do0lXww
linkProvider	ProQuest
linkToHtml	http://cvtisr.summon.serialssolutions.com/2.0.0/link/0/eLvHCXMw1V1JbxMxFLbagigXdkqggJFA4pBRO57M2EZCiK20ahNVVYt6G7xNGZRmSiYB5f9w5jfynmdpg1BuPXD1MnKct3zPfn4fIc9jgBROCRU4pTFAyRyoFOeBC1UCsdtmlBnjySb4YCCOj-X-EvndvIXBtMrGJnpDbQuDZ-QbjHMAL-DM5Zuz7wGyRuHtakOhUYnFrpv9hJCtfL3zAf7fF4xtfTx8vx3UrAKBBug-CZjdDI2FBQkJYFlHRmRYJF3aTIOrUolMYi24UCI00MJcrGLuEmGgVVtmRQTfXSZXwI6HmELGDz63ZzoAj2Qcs7q4URglG_r0G7JggSxCzAfevYfPppahdc4NeraAf0HcvzM1L7i-rZv_26bdIjdqkE3fVlpxmyy50R1yrV-nEdwlv_ararJBdWPiLNX-NQctMno6UyVWhMgVRWqmvHxF0dMjGqdjV06HkxKHwRCaXzxNpbA1zbPVLi10e9qthl06LJAWamqRggy-ooaBr1RLbX6CpC3UF_ml_dkBdPn0pqD_6R45upQ9uk9WRsXIPSDU06bqUMMHRE_3tNTgUqXWAOcywzLbIS9BhtLa3JSpj-SiJK3FLUVxSytx6xDWCFpq6rLvyD4yXDyp2046q6qeLB7-DiW4HYoly31DMT5JawuYChmzxCrDuYUoIUH1iSIVhdYYiTi1Q9YbGT7_YecC3CHP2m6wgHitpUaumFZjsOpdKDpkrVKXdiVRwhlAfJjN5xRpbqnzPaP8q6-yLoXEM76Hi5f1lKxuH_b30r2dwe4jch02BdMTAdmsk5XJeOoek6vmxyQvx0-8qaDky2Wr2R-jNaqu
linkToPdf	http://cvtisr.summon.serialssolutions.com/2.0.0/link/0/eLvHCXMw1V1JbxMxFLbagiou7EuggJFA4tBRMp7M2EZCCCiBqiSKKpB6G7xNGZRmSiYB5f_wK_h1vOdZ2iCUWw9cvYwc5y3fs5_fR8jTGCCFU0IFTmkMUDIHKsV54EKVQOzWizJjPNkEH43E0ZEcb5DfzVsYTKtsbKI31LYweEbeZZwDeAFnLrtZnRYx3hu8Ov0eIIMU3rQ2dBqViBy45U8I38qX-3vwXz9jbPDu09sPQc0wEGiA8fOA2V5oLCxOSADOOjIiw4Lp0mYa3JZKZBJrwYUSoYEW5mIVc5cIA63aMisi-O4mucTxchDTBnuH7fkOQCUZx6wudBRGSVeffENGLJBLiP_A0_fxCdUmtK64RM8c8C-4-3fW5jk3OLj2P2_gdXK1Bt_0daUtN8iGm94k28M6veAW-TWuqswG1U2Ks1T7Vx60yOjJUpVYKSJXFCmb8vIFRQSAKJ3OXLmYzEscBkNofv6UlcI2Nc9Zd2mh21NwNdmlkwLpohYWqcngK2oS-Aq21ObHSOZCffFfOlweQpdPewqG72-TzxeyR3fI1rSYunuEejpVHWr4gOjrvpYaXK3UGmBeZlhmO-Q5yFNam6Ey9RFelKS16KUoemkleh3CGqFLTV0OHllJJusn7baTTqtqKOuHv0FpbodiKXPfUMyO09oypkLGLLHKcG4hekiYBCcTqSi0xkjErx2y08jz2Q87E-YOedJ2g2XE6y41dcWiGoPV8ELRIXcr1WlXEiWcAfSH2XxFqVaWutozzb_66utSSDz7u79-WY_JNmhX-nF_dPCAXIE9waxFADw7ZGs-W7iH5LL5Mc_L2SNvNSj5ctFa9gfShLNL
openUrl	ctx_ver=Z39.88-2004&ctx_enc=info%3Aofi%2Fenc%3AUTF-8&rfr_id=info%3Asid%2Fsummon.serialssolutions.com&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.genre=article&rft.atitle=Patient-reported+burden+of+myasthenia+gravis%3A+baseline+results+of+the+international+prospective%2C+observational%2C+longitudinal+real-world+digital+study+MyRealWorld-MG&rft.jtitle=BMJ+open&rft.au=Dewilde%2C+Sarah&rft.au=Philips%2C+Glenn&rft.au=Paci%2C+Sandra&rft.au=Beauchamp%2C+Jon&rft.date=2023-01-31&rft.pub=BMJ+Publishing+Group+LTD&rft.eissn=2044-6055&rft.volume=13&rft.issue=1&rft.spage=e066445&rft_id=info:doi/10.1136%2Fbmjopen-2022-066445&rft.externalDBID=HAS_PDF_LINK
thumbnail_l	http://covers-cdn.summon.serialssolutions.com/index.aspx?isbn=/lc.gif&issn=2044-6055&client=summon
thumbnail_m	http://covers-cdn.summon.serialssolutions.com/index.aspx?isbn=/mc.gif&issn=2044-6055&client=summon
thumbnail_s	http://covers-cdn.summon.serialssolutions.com/index.aspx?isbn=/sc.gif&issn=2044-6055&client=summon