Patient Treatment Preferences in Myelin Oligodendrocyte Glycoprotein Antibody-associated Disease (MOGAD)
Hesham Abboud1, Sara Mariotto2, Beatrice Tugaut3, Teresa Gasalla4, Jackie Hee4, Aura Cecilia Jimenez-Moreno5, Karen Winkler6, Kerrie-Anne Ho7
1Case Western Reserve University, Cleveland, OH, US, 2Neurology Unit, University of Verona, Verona, Italy, 3UCB, Colombes, France, 4UCB, Morrisville, NC, US, 5Kielo Research, York, UK, 6Kielo Research, Hamburg, Germany, 7UCB, Slough, UK
Objective:
To understand the preferences of patients with MOGAD when balancing disease impacts, treatment risks and treatment benefits.
Background:

There are no approved disease-specific treatments for MOGAD. Understanding patient treatment preferences is key to addressing specific unmet needs for future therapies.

Design/Methods:

Interviews of patients (≥18 years) with a MOGAD diagnosis who self-reported ≥1 relapse (following onset event) were conducted, including qualitative (semi-structured discussion) and quantitative (online patient preference elicitation exercise) components. Multi-dimensional thresholding (quantitative method for eliciting preferences) was used to estimate relative importance of potential treatment attributes (delaying time to relapse, preventing worsening of vision, preventing worsening of motor symptoms, risk of infections, risk of aseptic meningitis, risk of headaches). Average and individual preference weights for each attribute were calculated. Qualitative data were analyzed using content and narrative analysis techniques.

Results:

From January–May 2025, 27 participants were interviewed: 22 (81%) from the USA, 5 (19%) from Europe (2 UK, 2 Germany, 1 Spain). Median age was 36 years and 81% were women; 18 (67%) and 9 (33%) had experienced 1 or ≥2 relapses, respectively. At interview, most (n=15, 56%) were experiencing multiple symptoms; the most common single presentation was optic neuritis (n=7, 26%). The most frequent current treatment was IV/SC Ig (n=12, 44%). Most participants reported that MOGAD symptoms impacted on work (n=26, 96%), emotions (n=25, 93%) and activities of daily living (n=23, 85%). Overall, participants gave greater weight to treatment benefits than risks: the highest mean (95% CI) weight was given to delaying time to relapse (0.445 [0.32, 0.572]); lowest was given to risk of headaches (0.056 [0.036, 0.077]). Qualitative quotes suggest that “longer time to relapse” is perceived as being associated with reduced symptom worsening and improved quality of life.

Conclusions:

MOGAD substantially impacts patients’ lives. Treatment benefits (i.e., improving treatment outcomes) were more important to patients than treatment risks.

10.1212/WNL.0000000000216732
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