Objective: To assess regional prevalence, demographics, survival, neurology access, and medication utilization in atypical parkinsonian disorders.

Background: Progressive supranuclear palsy (PSP), corticobasal syndrome (CBS), and multiple system atrophy (MSA) are rare neurodegenerative disorders with limited real-world data on healthcare utilization and outcomes.

Method: Retrospective cohort study (2015-2025) utilizing the OneFlorida+ Data Trust’s repository of EHR data from six university affiliated health systems. The database was queried for heathcare data from patients with ICD-10 codes G23.1 (PSP), G31.85 (CBS), G23.2/G23.3/G90.3 (MSA).

Results: The cohort included 5,526 patients: 1,812 PSP (54.4% male, mean age 71.4 years), 836 CBS (43.8% male, mean age 69.4 years), and 3,057 MSA (56.6% male, mean age 66.2 years). Median survival from diagnosis: PSP 2.18 years (SD 1.64), CBS 2.26 years (SD 1.62), and MSA 1.42 years (SD 1.56)—substantially shorter than published survival from symptom onset (6-9 years), suggesting diagnostic delay. Most common comorbid diagnoses were Parkinson’s disease across all groups, dysphagia and gait abnormalities in PSP, cognitive disorders in CBS, and orthostatic hypotension and sleep disorders in MSA. Only 35.5% of PSP, 42.4% of CBS, and 32.6% of MSA patients had documented neurology encounters. Among those seeing neurology, mean travel time was 2.51 hours (SD 4.23) for PSP, 2.18 hours (SD 2.66) for CBS, and 2.09 hours (SD 3.69) for MSA. Dopaminergic medications were prescribed to 45.3% of PSP, 35.5% of CBS, and 37.9% of MSA patients. Psychiatric medication prescriptions were common: 33.4% PSP, 39.1% CBS, and 36.2% MSA, with SSRIs as most prevalent. Notably, opioids were prescribed to 14.5%, 15.6% and 23.8% while benzodiazepines were prescribed to 13.3%, 16.9%, and 22.5% of PSP, CBS and MSA patients respectively.

Conclusion: This large real-world dataset reveals critical gaps in atypical parkinsonian care. Survival from diagnosis suggests substantial diagnostic delay. Most patients lack convenient local neurology access. High rates of opioid and benzodiazepine prescribing warrant attention as the efficacy and safety of these medicines in a population prone to falls and cognitive dysfunction is unclear. These findings highlight growing needs for earlier diagnosis, improved subspecialty care access, and medication stewardship in vulnerable populations.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/real-world-survival-healthcare-access-and-medication-patterns-in-atypical-parkinsonian-disorders-a-multi-system-ehr-analysis/