Impact of Symptoms of Neuromyelitis Optica Spectrum Disorder and Patient‐Determined Oral Glucocorticoid–Related Adverse Events on Patients' Daily Living and Emotions: A Qualitative Analysis From Japan

ABSTRACT Background and Objectives Neuromyelitis optica spectrum disorder (NMOSD) is a chronic disorder with a relapsing–remitting disease course that impacts patients' quality of life. Oral glucocorticoids (OGCs) have been the standard of care for NMOSD in Japan; however, their chronic use is associated with adverse events (AEs). We investigated the causal relationship between NMOSD symptoms and patient‐determined OGC‐related AEs (Pd‐OGC‐AEs) and their impact on patients' daily living and emotions. Methods This online interview survey was conducted between August and December 2023. Adult Japanese patients with aquaporin‐4 immunoglobulin G–seropositive NMOSD and currently taking or having a history of OGC use were asked about their episodes of NMOSD symptoms and Pd‐OGC‐AEs experienced to date and their impact on daily living and emotions. A qualitative analysis was performed by coding and categorizing data and assessing the causality of symptoms and AEs with patients' daily living and emotions, and a conceptual framework was developed. Results Fifteen patients (14 females; median [range] age, 53 [23–66] years) were included. Neurological findings were normal in four patients, with very mild symptoms in seven patients and mild disability and relatively severe impairment in two patients each. NMOSD symptoms such as visual and sensory disturbances and patient‐determined OGC‐related Cushing's syndrome affected patients' daily living and emotions by increasing their dependence on others and made them feel hopeless. Conclusions NMOSD symptoms and Pd‐OGC‐AEs adversely impacted patients' daily living and emotions. Based on these results, a survey questionnaire is being planned to assess patient preferences for tailored NMOSD treatment options.