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Vestibular Patient Journey: Insights From Vestibular Disorders Association (VeDA) Registry
Ali Rafati1, Sami I Nassar2, Shaun A Nguyen2
1Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Objective:
Vestibular symptoms impose a high burden of disability. Understanding real-world diagnostic and treatment pathways can identify care gaps and guide interventions. We aimed to characterize symptom profiles, diagnostic trends, provider involvement, and treatment patterns in vestibular disorders. We also examined whether these real-world pathways align with expected clinical features in vestibular diagnoses.
Methods:
Data from the Vestibular Disorders Association (VeDA) patient registry from March 21, 2023, to January 29, 2024 was analyzed, focusing on vestibular diagnoses, symptom patterns, care pathways, treatments, and diagnostic predictors.
Results:
Of 172 respondents (75.6% female), 66.3% reported multiple vestibular diagnoses (mean 1.8) and 18.9% reported inability to work. The most prevalent diagnoses were vestibular migraine (VM, 50.6%), benign paroxysmal positional vertigo (BPPV, 36.0%), Meniere's disease (26.9%), persistent postural-perceptual dizziness (PPPD, 20.9%), and vestibular neuritis (VN, 21.6%). VM overlapped with BPPV (44.8%), PPPD (31.0%), and Meniere's disease (27.6%). Patients consulted an average of ~15 providers, underscoring the combined effects of participation bias, diagnostic overlap, and fragmented care pathways characteristic of vestibular conditions. Symptoms, triggers, functional impact, provider involvement, and treatments were broadly similar across diagnoses. Logistic regressions revealed that VM was associated with frequent headaches, spontaneous vertigo, and frequent nausea/vomiting (ORs 24.70, 21.07, 5.58; p = 0.003, 0.02, 0.036), Meniere's with dietary improvement (OR 38.00; p = 0.016), PPPD with VM overlap and visual-induced vertigo (ORs 6.83, 0.02; p = 0.03, 0.02), and VN with the lowest frequency of autonomic symptoms (OR 0.00006; p = 0.005).
Interpretation:
The findings reveal a complex clinical landscape of vestibular disorders marked by multiple diagnoses and barriers to effective care. Overlapping symptom profiles across disorders further complicate diagnostic accuracy. Although regression analysis confirmed diagnosis-specific features, neither provider involvement nor treatments aligned consistently with diagnoses, highlighting fragmented care pathways. These findings call for clearer diagnostic pathways, enhanced provider training, and coordinated multidisciplinary care to improve diagnostic accuracy and treatment for vestibular disorders.
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