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

BackgroundPatients in late-stage Parkinsons disease (PDLS) are caregiver dependent, have low quality of life, and higher health care costs. ObjectiveTo estimate the prevalence of PDLS patients in the current United States (US) health care system. MethodsWe downloaded the 2010-2022 data from the TriNetX Diamond claims network that consists of 92 USA health care 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 are obtained and stratified by demographic and the disability subgroups. ResultsWe identified 1,031,377 PD patients in the TriNetX database. Of these, 18.8% fit 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), 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=5,121) Hispanic/Latino, 7.8% (n=4,557) 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 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.