This study aims to evaluate condition-specific knowledge among patients with rare neuroimmune disorders. 

Rare neuroimmune disorders (RNDs) include conditions such as neuromyelitis optica spectrum disorder (NMOSD), myelin oligodendrocyte glycoprotein antibody associated disease (MOGAD), acute disseminated encephalomyelitis (ADEM), idiopathic optic neuritis (ON) and transverse myelitis (TM). These conditions share significant phenotypic overlap, which makes communication of the diagnosis and relapse risk challenging for neurologists. This may predispose patients to have an incomplete understanding of their condition and long-term prognosis. In this study, we sought to understand the condition-specific knowledge in patients with RNDs.

A questionnaire was developed to assess condition-specific knowledge in patients with RNDs by a group of neuroimmunologists. An initial version of the test was administered to five individuals with RNDs, who provided feedback via semistructured interviews. The final version of the test included fifteen questions covering localization, symptoms, etiology, and relapse risk. The test was administered virtually to subjects via a Redcap survey. Subjects also completed a demographic questionnaire, the Medical Term Recognition Test (METER) for health literacy assessment, and the Patient Determined Disease Steps (PDDS).