Objective: To estimate the prevalence of PSP in the United States (US) and present a profile of PSP patients.

Background: Progressive supranuclear palsy (PSP) is a rare, neurodegenerative tauopathy characterized by vertical supranuclear gaze palsy and postural instability. The mean age of onset is the mid-sixties and prevalence is estimated at 6 per 100,000 persons [1]. Only one prior study, published in 1988, estimated the prevalence of PSP in the US.

Methods: Patients were identified from a US, employer-based, health insurance claims database, Truven Health MarketScan®, between January 2012 and October 2017. The database contains medical service and prescription drug claims from commercial and Medicare supplemental insurance plans for over 80 million enrollees. PSP was defined as >2 diagnosis codes occurring at least 27 days apart of ICD-10 code G23.1, or >1 ICD-9 code 333.0 and >1 ICD-10 code G23.1. The index date was defined as the date of the first observed diagnostic code for PSP. Prevalence was estimated in the year 2016 among enrollees with at least 28 days of continuous enrollment in 2016.

Results: 633 patients met the case definition for PSP. Crude prevalence of PSP was 1.89 per 100,000 and prevalence age-standardized to the US population was 2.95 per 100,000. A little over half (53.5%) of patients were male and the mean age at index date was 71.9 years. The most frequent comorbidities in PSP patients were nervous system disorders (96.6% of patients), connective tissue diseases (92.0%), eye disorders (85.2%), and non-traumatic joint disorders (84.8%). The most frequently prescribed medications after the index date were drugs for movement disorders (65.4%), anti-infectants (56.1%), and anti-depressants (53.8%).

Conclusions: By using billing records in a large, health insurance claims database, we estimated the prevalence of PSP in the US. This estimate may be representative of the prevalence among the employer-based, insured population under age 65, as patients over 65 are under-represented in the database. The prevalence is likely an under-estimate as PSP is challenging to diagnosis clinically and this study only includes diagnosed patients. In this analysis of over 600 PSP patients we found a high burden of comorbidities and prescription medication utilization. The information contributes to further knowledge of this rare disease.

References: Golbe, L.I., Progressive supranuclear palsy. Semin Neurol, 2014. 34(2): p. 151-9.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/prevalence-and-characteristics-of-patients-with-progressive-supranuclear-palsy-psp-in-us-health-insurance-claims-data/