NMOSD Patients Transitioning from Adolescent to Adult Care: A Multi-institutional Database Analysis in the United States
Melissa Wright1, Ka-Ho Wong2, Trieste Francis2, Abigail Sorenson3, John Rose4, Tammy Smith1, Stacey Clardy1
1University of Utah, 2U of U Neurology Clinic, 3University of California, 4Imaging and Neurosciences Center
Objective:

Describe population healthcare utilization trends and identify potential barriers and social determinants of health in a national cohort of young patients with NMOSD.  

Background:

Neuromyelitis Optica Spectrum Disorder (NMOSD) is a chronic, relapsing autoimmune disease primarily affecting the spinal cord and optic nerves. Patients may have significant accrual of neurologic disability with initial and subsequent attacks, making consistent long-term use of disease modifying therapies essential. There is little research on barriers that adolescent NMOSD patients experience when transitioning from pediatric to adult healthcare. Understanding social factors that place patients at highest risk for gaps in treatment is essential for successful transitions of care in this population.  

Design/Methods:

Deidentified aggregate data was obtained from TriNetX, a health research network providing access to electronic medical records that includes sixty-one healthcare organizations in the US. Patients with at least three visits coded with the ICD-10 code of NMO (G36.0) were queried within the database between 2008-2023. Data on healthcare utilization and demographic information were extracted for analysis. 

Results:

7,657 unique patients with NMOSD were identified in the TriNetX database and stratified into age groups to identify 193 patients in the 11 to 17 age group, 437 in the 18 to 25 age group, and 541 in the 26 to 31 age group. Within these three age groups, 71% (n=833) were female, 52% (n=606) identified as white, and 26% (n=3070) identified as black. We report here on the specific treatment gaps identified in this population.

Conclusions:

Given that young adults often experience insurance changes, relocations, and changes in providers as they move from adolescence to adulthood, they represent a group vulnerable to significant barriers and inequities in healthcare utilization. Identification of the specific challenges and social determinants of health which may place patients at high-risk for inconsistent treatment is essential to effect change aimed at optimizing long-term outcomes. 

10.1212/WNL.0000000000205669