Abstract
INTRODUCTION: Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare, autoimmune demyelinating central nervous system disease. Currently, little is known about the signs, symptoms, and health-related quality of life (HRQoL) impact of MOGAD from the patient perspective. This study explored the patient experience of MOGAD through concept elicitation interviews with patients with MOGAD and clinicians to develop a conceptual model of MOGAD. METHODS: A preliminary conceptual model of MOGAD signs, symptoms, treatments, and HRQoL impacts was developed based on a review of the published literature. Thematic analysis of semi-structured interviews with patients and clinicians was used to develop the final conceptual model. RESULTS: Twelve patients with MOGAD and two clinicians were interviewed. The most common patient-reported symptoms were eye pain, fatigue, body aches/pain, headaches, and blurred vision. Eye pain and body aches/pain were reported as the most bothersome symptoms and most important to improve with treatment. The HRQoL impacts most commonly reported by patients were difficulty with carrying out household chores, inability to work, depression, and difficulty walking. Impacts on work/school were considered by patients as the most bothersome to their HRQoL and the most important to resolve. Following the interviews, a final conceptual model was produced that reported 32 symptoms across seven domains (constitutional; visual; general neurological; sensory-motor neurological; genitourinary; gastrointestinal; and chest-related, respiratory, and throat) and 50 HRQoL impacts across eight domains (emotional wellbeing, activities of daily living, physical functioning, social functioning, work/school, cognitive functioning, sleep, and financial). CONCLUSIONS: This study provides important insights into the patient experience of MOGAD from patient and clinician perspectives, highlighting the underappreciated burden of the disease. The final conceptual model demonstrates the heterogeneity of MOGAD symptoms and their impact on patients' HRQoL. Future treatment trials should consider including appropriate measures to evaluate the key symptoms and HRQoL impacts identified in this study.