Patients’ perspectives of eosinophilic granulomatosis with polyangiitis within the context of a clinical trial

Eosinophilic granulomatosis with polyangiitis (EGPA) is a complex, multisystem form of vasculitis. MANDARA (NCT04157348) was a phase 3 clinical trial comparing the efficacy and safety of benralizumab versus mepolizumab, in addition to standard of care, for relapsing/refractory EGPA. This qualitative interview substudy explored study participants’ experiences with EGPA and their participation in the trial. Thirty-eight patients from 5 countries participating in MANDARA opted into a longitudinal qualitative substudy, which comprised two 60-minute, semistructured, one-to-one telephone interviews conducted by trained interviewers between December 2019 and June 2023. Topics discussed included motivation to join the trial, time since diagnosis, symptoms, and impacts of EGPA and their degree of ‘bothersomeness’ and ‘disturbance’. The desire to stop or reduce the use of oral glucocorticoids was the most frequently mentioned motivation for, and expectation of, participation in the trial. Comparison of interviews between the 2 time points suggested patients experienced reductions in the number and impact of EGPA-related symptoms and bothersomeness and/or disturbance ratings. Most improved symptoms included difficulty breathing, nasal congestion/discharge, and fatigue, and most improved impacts included ability to exercise, quality/quantity of sleep, and ability to engage in social activities. This study provides insights regarding patients’ perspectives of EGPA and their perceptions and experiences associated with receiving an anti-interleukin-5/receptor therapy. These findings highlight the need for effective treatments that allow patients to reduce their use of oral glucocorticoids and the importance of assessing patient experiences when gauging treatment efficacy in EGPA.

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Publication Details

Journal
EULAR Rheumatology Open
Published
2025-10-01
DOI
https://doi.org/10.1016/j.ero.2025.08.009
Primary Topic
Vasculitis and related conditions
Type
article
Field-Weighted Citation Impact
0.00
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article

Patients’ perspectives of eosinophilic granulomatosis with polyangiitis within the context of a clinical trial

Vivian H. Shih, Justina H. Hill, Ulrich Specks, Sofia Necander et al.
EULAR Rheumatology Open
Vasculitis and related conditions
article

Patients’ perspectives of eosinophilic granulomatosis with polyangiitis within the context of a clinical trial

Vivian H. Shih, Justina H. Hill, Ulrich Specks, Sofia Necander, Michael E. Wechsler, D. F. BADENOCH, Julie Bailey, Christian Pagnoux, Lena Börjesson Sjö, Jennifer Hanlon, Bernhard Hellmich, Calvin N. Ho, Caroline Roberts, Peter A. Merkel, Elena Pérez, Alisa Hartsell
article en

Abstract

Eosinophilic granulomatosis with polyangiitis (EGPA) is a complex, multisystem form of vasculitis. MANDARA (NCT04157348) was a phase 3 clinical trial comparing the efficacy and safety of benralizumab versus mepolizumab, in addition to standard of care, for relapsing/refractory EGPA. This qualitative interview substudy explored study participants’ experiences with EGPA and their participation in the trial. Thirty-eight patients from 5 countries participating in MANDARA opted into a longitudinal qualitative substudy, which comprised two 60-minute, semistructured, one-to-one telephone interviews conducted by trained interviewers between December 2019 and June 2023. Topics discussed included motivation to join the trial, time since diagnosis, symptoms, and impacts of EGPA and their degree of ‘bothersomeness’ and ‘disturbance’. The desire to stop or reduce the use of oral glucocorticoids was the most frequently mentioned motivation for, and expectation of, participation in the trial. Comparison of interviews between the 2 time points suggested patients experienced reductions in the number and impact of EGPA-related symptoms and bothersomeness and/or disturbance ratings. Most improved symptoms included difficulty breathing, nasal congestion/discharge, and fatigue, and most improved impacts included ability to exercise, quality/quantity of sleep, and ability to engage in social activities. This study provides insights regarding patients’ perspectives of EGPA and their perceptions and experiences associated with receiving an anti-interleukin-5/receptor therapy. These findings highlight the need for effective treatments that allow patients to reduce their use of oral glucocorticoids and the importance of assessing patient experiences when gauging treatment efficacy in EGPA.

EULAR Rheumatology OpenVol. 1(4)
Mount Sinai Hospital (CA), University Health Network (CA), Mayo Clinic (US), National Jewish Health (US), Canadian Arthritis Network (CA), IQVIA (United States) (US), Mayo Clinic in Arizona (US), Mayo Clinic in Florida (US), AstraZeneca (Spain) (ES), IQ Solutions (US), University of Pennsylvania (US), National Patient Safety Foundation (US), University of Colorado Denver (US)
Openalex Percentile: Top 56%
Vasculitis and related conditions
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