Assessing Condition-Specific Knowledge in Patients with Rare Neuroimmune Disorders
Shruti Mahale1, Peter Sguigna1, Lauren Tardo1, Linda Nguyen1, Gabrielle DeFiebre2, Kyle Blackburn1
1UT Southwestern Medical Center, 2Siegel Rare Neuroimmune Association
Objective:

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

Background:

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.

Design/Methods:

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).  

Results:
Ninety-two subjects completed the test of knowledge, and eighty-nine completed all procedures. The study population was largely female (73%), and 68% completed 16+ years of education. Individuals with MOGAD and NMOSD (n=45) scored higher on the test (median score 87%) compared to individuals with idiopathic conditions (n=45; median score 73%). Analysis for the correlation of test scores with age, duration since diagnosis, health literacy, and self-reported disability are ongoing. 
Conclusions:
Individuals with idiopathic conditions (TM, ON, ADEM) scored lower on our test when compared to the better-characterized conditions of NMOSD and MOGAD. Individuals with idiopathic conditions may benefit from targeted education about their diagnosis and relapse risk.
10.1212/WNL.0000000000211311
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