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

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.