Abstract Details

Title Patient Attitudes Towards NMOSD Diagnosis and Treatment: Final Survey Results

Topic Autoimmune Neurology

Presentation(s) Autoimmune Neurology Posters (7:00 AM-5:00 PM)

Poster/Presentation
Number 016

Objective To better understand the neuromyelitis optica spectrum disorder (NMOSD) patient experience throughout the course of their illness.

Background NMOSD is a rare autoimmune disorder that causes recurrent inflammatory attacks of the optic nerve, spinal cord, and brain. As a rare disease, knowledge and awareness of NMOSD are often limited, resulting in potential delays in diagnosis and treatment.

Design/Methods We developed a comprehensive survey to understand the patient’s perspective on their journey, from initial presentation to present status. After validating the instrument, we shared it with members of the NMO Clinic Facebook group. 151 patients responded to the 85 questions covering basic demographics, symptoms, medical testing to reach a diagnosis, and the patient’s psychosocial responses to the process. Consistency between internal responses indicated that the vast majority of patients understood the questions.

Results Patients primarily self-reported as White (76%), Asian (7%), or African American (7%). Time to diagnosis; mean (SD) was 2.2 (3.2) years. Initial reactions were primarily fear/shock and/or frustration. First contact with a medical professional was felt to be “not helpful” or “somewhat helpful” for many patients (71%), in part due to non-specific diagnosis and/or treatment. Once referred to specialists (primarily neurologists), the majority (98%) reported finding a professional who could help. While most patients reported that having a diagnosis and being under the care of a specialist gave them a comprehensive plan with the best hope for their future, 29% still felt challenged for a variety of reasons. Despite the complexities of the ongoing COVID-19 pandemic, 83% of patients reported confidence that their team had done all they can to help manage the current environment.

Conclusions The NMOSD patient journey frequently begins with fear and frustration. Finding the right specialist and identifying appropriate screening tests can lead to earlier diagnosis and progression towards better patient outcomes.

Authors/Disclosures
Guillermo R. Delgado-Garcia, MD, MSc (University of Calgary - Alberta Health Services) PRESENTER	Dr. Delgado-Garcia has received research support from Consejo Nacional de Ciencia y Tecnologia (Mexico). Dr. Delgado-Garcia has received research support from Consejo Nacional de Ciencia y Tecnologia (Mexico). Dr. Delgado-Garcia has a non-compensated relationship as a Editorial Team Member with Neurology Resident & Fellow Section that is relevant to AAN interests or activities. Dr. Delgado-Garcia has a non-compensated relationship as a Editorial Board Member with Brain and Life en Espanol that is relevant to AAN interests or activities. Dr. Delgado-Garcia has a non-compensated relationship as a Editorial Board Member with Neurology Clinical Practice that is relevant to AAN interests or activities.
	No disclosure on file
	No disclosure on file
Michael Levy, MD, PhD, FAAN (Massachusetts General Hospital/Harvard Medical School)	Dr. Levy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Mitsubishi Pharma. Dr. Levy has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB Pharma. Dr. Levy has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sanofi. Dr. Levy has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Levy has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Horizon. Dr. Levy has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech. Dr. Levy has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Elsevier. Dr. Levy has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for Various law firms. The institution of Dr. Levy has received research support from National Institutes Health.

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