Patient Experience of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease: Qualitative Patient and Clinician Interviews Informing the Development of a Conceptual Model
Journal: Neurology and Therapy; June 12, 2025
Author(s): Jeffrey L. Bennett, Asha Paireddy, Charlotte Cox, Megan Mayhew, Julia Stein, Teresa Gasalla, Béatrice Tugaut
What is life like for people with MOGAD?
In this study, researchers aimed to understand what life is like for people living with MOGAD by interviewing 12 adult patients living MOGAD and 2 doctors who treat it. Through these conversations and by reviewing patient blogs and other published journal papers, researchers developed a visual representation of the patient experience, called a “conceptual model,” that captures what symptoms people have and how these symptoms affect their daily life and wellbeing.
The final conceptual model had 32 different symptoms and 50 types of impacts on quality of life. Symptoms were categorized under across areas such as
- general effect of the disease
- visual symptoms
- neurological symptoms, affecting the brain, spinal cord or nerves
- sensory-motor symptoms, affecting how the brain processes sensory cues and controls movement of the arms and legs (motor function)
- genitourinary symptoms (affecting the reproductive and urinary systems)
- gastrointestinal symptoms (affecting the digestive system), and
- chest-related, respiratory (breathing-related), and throat-related symptoms
Poor quality of life showed up as difficulty walking, inability to work or do household chores, emotional distress, impacts on relationships, difficulty with thinking and/or poor memory, sleep problems, and financial problems.
This study shows how MOGAD causes a range of symptoms and adversely affects many aspects of patients’ lives. Future studies can consider treatments that address some of these detrimental aspects of the disease holistically.
Related article: Pain in NMOSD and MOGAD: A Systematic Literature Review of Pathophysiology, Symptoms, and Current Treatment Strategies
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