Frequency of Neuromyelitis Optica Spectrum Disorder Correlated Symptoms: A Pre- and Post-diagnosis Comparison from a National Dataset
Abigail Sorenson1, Esther Zeng1, Tammy Smith2, Melissa Wright2, Aditi Sharma2, Trieste Francis2, John Rose2, Ka-Ho Wong2, Stacey Clardy2
1University of California, Berkeley, 2University of Utah
Objective:
Determine most common symptom diagnoses of neuromyelitis optica spectrum disease (NMOSD) pre- and post-NMOSD diagnosis and how the symptoms are followed.
Background:
NMOSD is an antibody-mediated autoimmune disorder affecting the central nervous system, mainly targeting the optic nerves and spinal cord. Common clinical characteristics of NMOSD include myelitis, optic neuritis, neurogenic pain, nausea/vomiting/hiccups, fatigue, and bowel/bladder dysfunction.
Design/Methods:
NMOSD diagnosis code was queried to form a de-identified aggregate dataset focused on United States patients: TriNetX is a global research network covering 68 US hospital systems. The NMOSD diagnosis dates range from 1992 to 2022. To increase specificity, patients with less than three NMOSD ICD-10-CM (G36.0) codes were excluded.
Results:
We identified 2350 unique patients who met the inclusion criteria for further analysis. Of this population 1806 (76.9%) were female, median age was 50.75y [3 – 91], 51.3% were white, 30.4% were black, 3.4% were Asian, and 14.4% were unknown. 1437 (61.15%) patients had recorded symptom ICD-10-CM codes pre-NMOSD diagnosis, 1618 (68.85%) had recorded symptoms post-diagnosis, and 1170 (49.79%) had recorded symptoms pre- and post-diagnosis. For pre- and/or post-NMOSD diagnosis, 965 patients had a recorded optic neuritis diagnosis, 801 had bladder/bowel dysfunction, 771 had muscle weakness, 612 had loss of sensation, 577 had myelitis, 541 had nausea/vomiting/hiccups, 430 had fatigue, 45 had neurogenic pain. Further the following symptoms were recorded pre- and post-NMOSD diagnosis: 517 of 965 (53.58%) patients had optic neuritis, 273 (47.41%) had myelitis, 244 (31.65%) had muscle weakness, 286 (35.71%) had bladder/bowel dysfunction, 126 (23.29%) had nausea/vomiting/hiccups, 132 (21.57%) had loss of sensation, 83 (19.3%) had fatigue, and 4 (8.89%) had neurogenic pain.
Conclusions:
The TrinetX database provides an important resource to understand major symptom frequencies in NMOSD prior to formal diagnosis and longitudinally post diagnosis. Future studies can provide insight into the full spectrum of NMOSD symptoms and clinical outcomes.