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Patient-reported impact of myasthenia gravis in the real world: findings from a digital observational survey-based study (MyRealWorld MG).
BMJ Open. 2023 May 11; 13(5):e068104.BO

Abstract

OBJECTIVES

This study aims to explore the impact of myasthenia gravis (MG) - in terms of treatments, side effects, comorbidities, psychological health and work or study- in the real world from a patient perspective.

DESIGN AND PARTICIPANTS

This is a prospective, observational, digital, longitudinal study. Adults diagnosed with MG residing in the USA, Japan, Germany, the UK, Italy, Spain or Canada were eligible to participate in the study. There were no other exclusion criteria. Participants used a bespoke smartphone application to confirm eligibility, provide consent and enter data about their MG into a profile, a tracker to record MG-related events and a series of patient-reported outcome instruments. 1693 participants completed at least 1 survey and were included in this analysis.

RESULTS

Results are presented as a percentage of respondents to each survey question. The study population was largely female (69% of 1586 respondents), with an average age of 49.9 years (SD 14.8). In the previous 12 months, 83.7% of 1412 respondents confirmed that they had received one or more routine treatments for MG, and 67.1% of 255 respondents confirmed that they had experienced a side effect in the previous month. Commonly experienced comorbidities reported by 966 respondents were thyroid problems, hypertension and anxiety, experienced by 37.5%, 31.4% and 28.0% of respondents, respectively.According to 889 respondents to the Hospital Anxiety and Depression Scale survey, 52.7% and 43.2% had a score indicative of at least mild anxiety and mild depression, respectively. Of 257 respondents, 33.0% reported experiencing a work or study impact in the past month.

CONCLUSIONS

This analysis of baseline characteristics of the MyRealWorld MG study population indicates that, despite current treatments, patients experience notable burden. Further scheduled analyses will develop a longitudinal picture of MG burden.

TRIAL REGISTRATION NUMBER

NCT04176211.

Links

PMC Free PDF

Authors+Show Affiliations

Berrih-Aknin S
INSERM, Institute of Myology, Center of Research in Myology, Sorbonne Université, Paris, France.
Palace J
Department of Clinical Neurology, John Radcliffe Hospital, Oxford, UK.
Meisel A
Department of Neurology, Neuroscience Clinical Research Center, Charite Universitatsmedizin Berlin, Berlin, Germany.
Claeys KG
Department of Neurology, KU Leuven University Hospitals, Leuven, Belgium. Laboratory for Muscle Diseases and Neuropathies, Department of Neurosciences, KU Leuven, Leuven, Belgium.
Muppidi S
Department of Neurology and Neurosciences, Stanford University, Stanford, California, USA.
Saccà F
Department of DNSRO, University of Naples Federico II, Napoli, Italy.
Amini F
Vitaccess Limited, Oxford, UK fatemeh.amini@vitaccess.com.
Larkin M
Vitaccess Limited, Oxford, UK.
Quinn C
Vitaccess Limited, Oxford, UK.
Beauchamp J
Argenx BV, Ghent, Belgium.
Philips G
Argenx BV, Ghent, Belgium.
De Ruyck F
Argenx BV, Ghent, Belgium.
Ramirez J
Argenx BV, Ghent, Belgium.
Paci S
Argenx BV, Ghent, Belgium.

MeSH

AdultHumansFemaleMiddle AgedLongitudinal StudiesMyasthenia GravisSurveys and QuestionnairesAnxietyProspective Studies

Pub Type(s)

Observational Study
Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

37169499

Clinical Trial Links

Clinical trial which this article describes

Citation

Berrih-Aknin, Sonia, et al. "Patient-reported Impact of Myasthenia Gravis in the Real World: Findings From a Digital Observational Survey-based Study (MyRealWorld MG)." BMJ Open, vol. 13, no. 5, 2023, pp. e068104.
Berrih-Aknin S, Palace J, Meisel A, et al. Patient-reported impact of myasthenia gravis in the real world: findings from a digital observational survey-based study (MyRealWorld MG). BMJ Open. 2023;13(5):e068104.
Berrih-Aknin, S., Palace, J., Meisel, A., Claeys, K. G., Muppidi, S., Saccà, F., Amini, F., Larkin, M., Quinn, C., Beauchamp, J., Philips, G., De Ruyck, F., Ramirez, J., & Paci, S. (2023). Patient-reported impact of myasthenia gravis in the real world: findings from a digital observational survey-based study (MyRealWorld MG). BMJ Open, 13(5), e068104. https://doi.org/10.1136/bmjopen-2022-068104
Berrih-Aknin S, et al. Patient-reported Impact of Myasthenia Gravis in the Real World: Findings From a Digital Observational Survey-based Study (MyRealWorld MG). BMJ Open. 2023 05 11;13(5):e068104. PubMed PMID: 37169499.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Patient-reported impact of myasthenia gravis in the real world: findings from a digital observational survey-based study (MyRealWorld MG). AU - Berrih-Aknin,Sonia, AU - Palace,Jacqueline, AU - Meisel,Andreas, AU - Claeys,Kristl G, AU - Muppidi,Srikanth, AU - Saccà,Francesco, AU - Amini,Fatemeh, AU - Larkin,Mark, AU - Quinn,Casey, AU - Beauchamp,Jon, AU - Philips,Glenn, AU - De Ruyck,Femke, AU - Ramirez,Joyce, AU - Paci,Sandra, Y1 - 2023/05/11/ PY - 2023/5/15/medline PY - 2023/5/12/pubmed PY - 2023/5/11/entrez KW - adult neurology KW - neurology KW - neuromuscular disease SP - e068104 EP - e068104 JF - BMJ open JO - BMJ Open VL - 13 IS - 5 N2 - OBJECTIVES: This study aims to explore the impact of myasthenia gravis (MG) - in terms of treatments, side effects, comorbidities, psychological health and work or study- in the real world from a patient perspective. DESIGN AND PARTICIPANTS: This is a prospective, observational, digital, longitudinal study. Adults diagnosed with MG residing in the USA, Japan, Germany, the UK, Italy, Spain or Canada were eligible to participate in the study. There were no other exclusion criteria. Participants used a bespoke smartphone application to confirm eligibility, provide consent and enter data about their MG into a profile, a tracker to record MG-related events and a series of patient-reported outcome instruments. 1693 participants completed at least 1 survey and were included in this analysis. RESULTS: Results are presented as a percentage of respondents to each survey question. The study population was largely female (69% of 1586 respondents), with an average age of 49.9 years (SD 14.8). In the previous 12 months, 83.7% of 1412 respondents confirmed that they had received one or more routine treatments for MG, and 67.1% of 255 respondents confirmed that they had experienced a side effect in the previous month. Commonly experienced comorbidities reported by 966 respondents were thyroid problems, hypertension and anxiety, experienced by 37.5%, 31.4% and 28.0% of respondents, respectively.According to 889 respondents to the Hospital Anxiety and Depression Scale survey, 52.7% and 43.2% had a score indicative of at least mild anxiety and mild depression, respectively. Of 257 respondents, 33.0% reported experiencing a work or study impact in the past month. CONCLUSIONS: This analysis of baseline characteristics of the MyRealWorld MG study population indicates that, despite current treatments, patients experience notable burden. Further scheduled analyses will develop a longitudinal picture of MG burden. TRIAL REGISTRATION NUMBER: NCT04176211. SN - 2044-6055 UR - https://www.unboundmedicine.com/medline/citation/37169499 DB - PRIME DP - Unbound Medicine ER -
Grapherence [↓13 ↑35]

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