Work

Prevalence of Late‐Stage Parkinson's Disease in the US Healthcare System: Insights from TriNetX

Year: 2024

Type: article

Abstract: Background Patients in late‐stage Parkinson's disease (PD LS ) are caregiver‐dependent, have low quality of life, and higher healthcare costs. Objective To estimate the prevalence of PD LS patients in the current US healthcare system. Methods We 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 PD LS was identified by the usage of wheelchair dependence, personal care assistance, and/or presence of diagnoses of dementia. Age of PD LS identification and survival information were obtained and stratified by demographic and the disability subgroups. Results We identified 1,031,377 PD patients in the TriNetX database. Of these, 18.8% fitted our definition of PD LS (n = 194,297), and 10.2% met two or more late‐stage criteria. Among all PD LS , the mean age of PD LS identification was 78.1 (±7.7) years, and 49% were already reported as deceased. PD LS patients were predominantly male (58.5%) with similar distribution across PD LS 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 PD LS cohort, 71.6% identified with dementia, 12.9% had personal care assistance, and 4.8% were wheelchair‐bound. Conclusions Late‐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.

Source: Movement Disorders

DOI: 10.1002/mds.29900