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Concordance between patient- and physician-reported Myasthenia Gravis Activities of Daily Living (MG-ADL) scores

  • Sarah Dewilde*
  • , M. F. Janssen
  • , Nafthali H. Tollenaar
  • , Fiammetta Vanoli
  • , Rita Frangiamore
  • , Glenn Phillips
  • , Sandra Paci
  • , Renato Mantegazza
  • , Andreas Meisel
  • , Frauke Stascheit
  • *Corresponding author for this work
  • Services in Health Economics
  • IRCCS Fondazione Istituto Neurologico Carlo Besta - Milano
  • University of Rome La Sapienza
  • argenx BV
  • Charité – Universitätsmedizin Berlin

Research output: Contribution to journalArticleAcademicpeer-review

12 Citations (Scopus)
118 Downloads (Pure)

Abstract

Introduction/Aims: Myasthenia gravis (MG) is a neuromuscular disease characterized by abnormal skeletal muscle fatiguability. The MG Activities of Daily Living (MG-ADL) scale assesses eight symptoms and is often used as primary endpoint in MG clinical trials where it is completed by neurologists. However, in observational studies, patients frequently complete the MG-ADL scale independently of their neurologist. In this study we aimed to assess the concordance between self- and physician-reported MG-ADL scores. Methods: An international observational study was conducted among adult patients with MG scheduled for a routine visit or who entered the hospital via emergency services. Consenting patients and physicians completed the MG-ADL. Concordance between assessments was calculated using Gwet's agreement coefficient (Gwet's AC) for the MG-ADL individual items and the intraclass correlation coefficient (ICC) for the MG-ADL total score. Results: Data were collected from 137 patients (63% female; mean age, 57.7 years). Physicians assessed the patient's symptoms as slightly more severe (8.1 vs 7.5 MG-ADL total score, respectively), corresponding to a difference of 0.6 on a range from 0 to 24. The ICC for the MG-ADL total score between the patient and the physician assessment was 0.94 (95% confidence interval, 0.89 to 0.95), showing excellent concordance. Gwet's AC showed substantial to almost perfect agreement for all items, except eyelid droop, for which the agreement was moderate. Discussion: Our results demonstrate that patients and neurologists have a concordant assessment of the patient's MG symptoms when using the MG-ADL scale. This evidence supports patient self-administration of the MG-ADL in clinical practice and research.

Original languageEnglish
Pages (from-to)65-72
Number of pages8
JournalMuscle and Nerve
Volume68
Issue number1
DOIs
Publication statusPublished - Jul 2023

Bibliographical note

Funding Information:
The study is funded by argenx BV, Ghent, Belgium.

Publisher Copyright:
© 2023 The Authors. Muscle & Nerve published by Wiley Periodicals LLC.

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