Affiliation:
1. Department of Neurology Pennsylvania State University‐Milton S. Hershey Medical Center Hershey Pennsylvania USA
2. Translational Brain Research Center Pennsylvania State University‐Milton S. Hershey Medical Center Hershey Pennsylvania USA
3. Department of Public Health Science Pennsylvania State University‐Milton S. Hershey Medical Center Hershey Pennsylvania USA
4. Department of Pharmacology Pennsylvania State University‐Milton S. Hershey Medical Center Hershey Pennsylvania USA
5. Department of Radiology Pennsylvania State University‐Milton S. Hershey Medical Center Hershey Pennsylvania USA
6. Department of Neurosurgery Pennsylvania State University‐Milton S. Hershey Medical Center Hershey Pennsylvania USA
Abstract
AbstractBackgroundPatients in late‐stage Parkinson's disease (PDLS) are caregiver‐dependent, have low quality of life, and higher healthcare costs.ObjectiveTo estimate the prevalence of PDLS patients in the current US healthcare system.MethodsWe downloaded the 2010–2022 data from the TriNetX Diamond claims network that consists of 92 US healthcare sites. PD was identified using standard diagnosis codes, and PDLS was identified by the usage of wheelchair dependence, personal care assistance, and/or presence of diagnoses of dementia. Age of PDLS identification and survival information were obtained and stratified by demographic and the disability subgroups.ResultsWe identified 1,031,377 PD patients in the TriNetX database. Of these, 18.8% fitted our definition of PDLS (n = 194,297), and 10.2% met two or more late‐stage criteria. Among all PDLS, the mean age of PDLS identification was 78.1 (±7.7) years, and 49% were already reported as deceased. PDLS patients were predominantly male (58.5%) with similar distribution across PDLS subgroups. The majority did not have race (71%) or ethnicity (69%) information, but for the available information >90% (n = 53,162) were White, 8.2% (n = 5121) Hispanic/Latino, 7.8% (n = 4557) Black, and <0.01% (n = 408) Asian. Of the PDLS cohort, 71.6% identified with dementia, 12.9% had personal care assistance, and 4.8% were wheelchair‐bound.ConclusionsLate‐stage patients are a significant part of the PD landscape in the current US healthcare system, and largely missed by traditional motor‐based disability staging. It is imperative to include this population as a clinical, social, and research priority. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.