Palliative Care as a Parkinson's Disease Standard of Care

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Background: Parkinson’s disease (PD) is the second most common neurodegenerative condition among individuals over the age of 60 years and Veterans are at increased risk of PD due to traumatic head injuries and exposure to herbicides. PD causes both motor symptoms such as tremor but also distressing nonmotor symptoms such as depression and pain. These symptoms are associated with reduced quality of life, caregiver distress, disability, and nursing home placement. Importantly, outpatient palliative care (PC) can improve the care of patients and their care partners by addressing current gaps in care related to advance care planning, nonmotor symptom management, caregiver support and psychosocial issues. Significance: The Department of Veterans Affairs (VA) is uniquely positioned to lead integration of PC into PD care. First, since 2003 VA has mandated fully staffed PC teams in every VA Medical Center. As a result of this sustained investment, VA has experienced steady growth in PC consultation volume expanding from primarily inpatient services to growth of outpatient PC programs. Second, specialized VA centers known as Parkinson’s Disease Research, Education, and Clinical Centers or "PADRECC” and “Parkinson’s Disease Consortium Centers” comprise the National VA Parkinson’s Disease Consortium in a hub and spoke model. The PADRECCs operate as hubs with Consortium Centers serving each VA regional network as spokes to extend the reach of services and serve as ideal sites to recruit for integration of palliative care. Innovation & Impact: With over 170,000 Veterans affected by PD, VA has an opportunity to emerge as a leader in providing state-of-the-art PD management. This project will integrate PC using multiple implementation strategies to improve the key patient and care partner-centered outcomes in PD and will inform integration of PC into specialty care more broadly. Specific Aims: Aim 1 (Pre- Implementation) seeks to understand contextual factors and perceived barriers that influence integration, evaluation and dissemination of PC for Veterans diagnosed with PD using the Practical, Robust Implementation and Sustainability Model (PRISM). Aim 2 (Implementation) compares the integration of three core PC components (Advance care planning, Non-motor symptom management, and Veteran and care partner psychosocial support) into the care of Veterans receiving PD specialty care using “passive” (education/clinical tools + feedback report) versus “active” (Passive + coaching) strategies. Methodology: The QUERI implementation roadmap (Pre-implementation->Implementation->Sustainment) guides the proposed project with use of the theory-based implementation frameworks to inform the intervention and data analysis. Intervention delivery will occur using covariate constrained cluster randomization of PD sites to the implementation strategies and the RE-AIM (Reach Effectiveness Adoption Implementation Maintenance) framework will be applied to understand factors facilitating and interfering with successful implementation. The primary analysis will compare integration of all three core PC components into the care of Veterans with PD between sites randomized to passive versus active strategies. Semi-structured interviews will be conducted with site champions, Veterans/care partners and leadership at participating sites. Next Steps: Aim 3 (Sustainment) is focused on refining the intervention to sustain, optimize, scale-up and scale-out PC for Veterans with PD by linking contextual factors identified in Aim 1 with observed implementation success and results of a budget impact analysis of passive versus active implementation strategies to support PC as a standard of PD care. These data will be used to refine the implementation strategies, develop an enterprise- wide implementation plan and inform of strategies for other sub-specialties interested in PC integration.