Leveraging a Natural Experiment to Determine the Effects of Integrated Palliative Care on Health Service Outcomes and Disparities in Parkinson Disease and Lewy Body Dementia

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PROJECT SUMMARY/ABSTRACT Under current care models, persons living with Parkinson Disease (PD) or Parkinson Disease Dementia (PDD), receive excessive, low-value care. “Non-motor” symptoms in PD and PDD are underrecognized and undertreated and are the leading precipitants of hospitalization and institutionalization. Potentially inappropriate medication use for non-motor symptoms is widespread in PD and PDD. Advanced care planning is rare (<5%), ICU care at the end of life and in-hospital deaths are common (>20%). Addressing these unmet needs, which fall under the palliative care domains of care planning, symptom management, safe prescribing, and end of life care would have major population health impacts. Persons living with PD and with PDD also receive unequal care. Early work has shown that static individual factors-female sex, Hispanic ethnicity, and Asian and Black race- associate with a lower likelihood of receiving guideline PD and PDD care. In turn, current strategies to reduce disparities focus on individual behaviors (like help-seeking), even though disparities are also driven by factors operating at the provider, health system and policy levels. Broadening the scope of PD/PDD disparities research to include the study of health care organizational structure and care delivery processes could identify new mechanistic pathways for such disparities, and open new avenues for achieving equitable outcomes. Disease-tailored palliative care (PC) has been shown to improve outcomes and reduces low-value care in multiple neurological diseases. Recently, PD-tailored, team-based, neurology-led PC has been demonstrated to improve patient quality of life, non-motor symptom management and caregiver outcomes. Based on these results, a large-scale implementation project to make integrated PC the new care standard in approximately half of U.S. academic Movement Disorders Centers is underway. We propose to leverage the natural experiment created by the implementation project to determine the effects of neurology team led PC on health service outcomes, and to provide evidence on the degree to which alterations of health care organizational structure and delivery processes impact health care and outcome disparities experienced by minority,female, rural, and socioeconomically disadvantaged PD and PDD populations. The aims of this application are (1) to examine PC domain health care use and PC disparities among Medicare beneficiaries with PD and PDD, and (2) to test the effects of a PC Intervention on PC domain health care utilization outcomes and outcome disparities. Our proposed work will produce benchmark national data on PD, PDD outcomes, illuminate center-level variations in PD and PDD disparities. We also expect to inform PD/PDD-specific neuropalliative care standards. Our results will impact neurology research and care through our innovative approach of evaluating an ongoing dissemination project through public health and health equity lenses to understand the drivers of academic neurology center disparities.