Association Between Myasthenia Gravis–Activities of Daily Living (MG-ADL) and EQ-5D-5L Utility Values: The Additional Effect of Efgartigimod on Utilities

Abstract

Introduction: For patients with generalized myasthenia gravis (gMG), the association between symptom severity, often measured with the Myasthenia Gravis Activities of Daily Living (MG-ADL) instrument, and utility values is unknown. Methods: Data was analyzed from the phase 3 ADAPT trial, which included adult patients with gMG randomly assigned to treatment with efgartigimod ? conventional therapy (EFG ? CT) or placebo ? CT (PBO ? CT). MG-ADL total symptom scores and the EQ-5D-5L, a measure of health-related quality of life (HRQoL), were collected biweekly up to 26 weeks. Utility values were derived from the EQ-5D-5L data with the United Kingdom value set. Descriptive statistics were reported for MG-Supplementary Information The online version contains supplementary material available at https://

Expert consensus recommendations for improving and standardising the assessment of patients with generalised myasthenia gravis

“…The MG‐ADL is used in the routine clinical management of gMG, where a two‐point improvement since the last patient visit indicates clinical improvement [18]. Of benefit, the MG‐ADL is an MG‐specific questionnaire that can be self‐administered or recorded by the physician, and evidence shows that the MG‐ADL is a reliable assessment, independent of whether it is used as a self‐administered tool by the patient or recorded by a physician [19]. The MG‐ADL provides a good balance between disease evaluation and administration time (approximately 2–3 min) [18], and its consistent use is recommended by the Sub‐committee.…”

“…Since the MG‐ADL can be accurately recorded by the patient, it has applications in telemedicine [18, 19], which is becoming increasingly important given the recent global COVID‐19 pandemic. Although there has been no formal validation of the MG‐ADL in telemedicine for MG, recent work has come close to validating the MG‐ADL in this setting; in this study, only a suitable digital device (e.g., smartphone, tablet) was needed to capture MG‐ADL scores and complete formal validation [19].…”

“…Since the MG‐ADL can be accurately recorded by the patient, it has applications in telemedicine [18, 19], which is becoming increasingly important given the recent global COVID‐19 pandemic. Although there has been no formal validation of the MG‐ADL in telemedicine for MG, recent work has come close to validating the MG‐ADL in this setting; in this study, only a suitable digital device (e.g., smartphone, tablet) was needed to capture MG‐ADL scores and complete formal validation [19]. If digitalised, training could be provided to enable patients to complete the assessment on their smartphone, which they would be able to do more regularly (e.g., on a weekly basis).…”

“…Since the MG-ADL can be accurately recorded by the patient, it has applications in telemedicine [18,19], which is becoming increasingly important given the recent global COVID-19 pandemic.…”

People Diagnosed with Myasthenia Gravis have Lower health-related quality of life and Need More Medical and Caregiver Help in Comparison to the General Population: Analysis of Two Observational Studies

“…In this study, a total MG-ADL score of 0–4 was considered mild, 5–9 moderate, and 10 or higher severe. These cut-offs were established based on input from neurologists and inclusion criteria from clinical trials, where a score of 5 and above was used to classify patients as moderate-to-severe, and are currently being utilized in multiple publications and analyses [ 36 , 37 ]. The MG-ADL scale was originally designed for clinical settings to be completed by a neurologist while examining his/her patient.…”