Abstract Details

Title The Diagnostic Journey of Patients with Progressive Supranuclear Palsy (PSP) in US Electronic Health Record Data

Topic Movement Disorders

Presentation(s) P3 - Poster Session 3 (5:30 PM-6:30 PM)

Poster/Presentation
Number 10-007

Objective To identify patients with progressive supranuclear palsy (PSP) in a United States (US) electronic health record (EHR) database and determine the frequency of a range of specified diagnoses prior to PSP diagnosis.

Background PSP is a rare neurodegenerative tauopathy characterized by postural instability and supranuclear gaze palsy leading to death ~7 years after symptom onset. Patients with PSP are often initially diagnosed with Parkinson’s disease (PD); PSP diagnosis is made ~3-4 years from symptom onset. A specific diagnostic code for PSP, G23.1 (progressive supranuclear ophthalmoplegia), was introduced in ICD-10.

Design/Methods Data from >34 million US patients in the de-identified Optum® EHR database (2007-2017) were reviewed. Cases of PSP were defined as patients with ≥1 ICD-10 code G23.1 or ≥1 terms related to PSP (e.g. progressive supranuclear palsy, supranuclear gaze palsy or supranuclear palsy) identified in medical records through natural language processing. Index date was defined as the date of the first diagnostic code or term for PSP.

Results In total, 7,619 patients met the PSP case definition. Age at index date was 60-79 years in 61.7% of patients, while 12.5% were age 40-59 and 25.7% age ≥80. Approximately half (52.4%) were male. Three-quarters had ≥1 and 54% had >3 years of follow-up time prior to index date. Prior to the index date, 33% of patients with PSP had a PD diagnosis and 17% a dementia diagnosis.

Conclusions This is the largest known sample of PSP patients in the US using EHR data. We will examine a range of diagnoses (e.g. PD, dementia, gait disorders) documented in patient’s medical records 1-5 years prior to index date and conduct an analysis of the diagnostic timing and the type of provider who recorded the diagnosis. These analyses may provide a better understanding of the diagnostic journey and aid in earlier identification of individuals with PSP.

Authors/Disclosures
PRESENTER	No disclosure on file
	No disclosure on file
Susan A. Eaton, PharmD (AbbVie)	No disclosure on file
Susan A. Hall, PhD (New England Research Institute)	No disclosure on file
	No disclosure on file
Yuval Zabar, MD	No disclosure on file
Angela Paradis	Angela Paradis has received personal compensation for serving as an employee of Biogen. An immediate family member of Angela Paradis has received personal compensation for serving as an employee of Biogen. Angela Paradis has received stock or an ownership interest from Biogen. An immediate family member of Angela Paradis has received stock or an ownership interest from Biogen.
	No disclosure on file

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