Palliative Care as a Parkinson's Disease Standard of Care

背景：帕金森病(PD)是第二常见的神经退行性疾病 60岁以上的人和退伍军人因头部创伤而患帕金森病的风险增加 以及接触除草剂。帕金森病既会引起震颤等运动症状，也会引起令人痛苦的非运动症状 抑郁和疼痛等症状。这些症状与生活质量下降有关，照顾者 困境、残疾和养老院安置。重要的是，门诊姑息治疗(PC)可以改善 通过解决目前与提前护理计划相关的护理方面的差距来护理患者及其护理伙伴， 非运动性症状管理、照顾者支持和心理社会问题。意义：该部门 退伍军人事务部(VA)在引领PC与PD护理的整合方面具有独特的地位。首先，自2003年以来，退伍军人管理局 强制在每个退伍军人医疗中心配备全员PC团队。作为这一持续投资的结果，退伍军人管理局 PC诊疗量稳步增长，从主要的住院服务扩展到 门诊PC程序。第二，专门的退伍军人管理局帕金森氏病研究、教育、 临床中心或“PADRECC”和“帕金森病联盟中心”组成了国家退伍军人管理局 帕金森氏病联盟的中心和辐条模型。PADRECC作为与财团的枢纽运营 为每个退伍军人管理局区域网络提供服务的中心作为辐条，以扩展服务范围并成为理想的站点 为整合姑息治疗招募新兵。创新与影响：受PD影响的退伍军人超过17万人， 退伍军人管理局有机会成为提供最先进的PD管理的领导者。这个项目将 使用多种实施策略整合PC，以改善以关键患者和护理合作伙伴为中心的工作 帕金森病的结果，并将更广泛地将PC整合到专科护理中。具体目标：目标1(前 实施)寻求了解影响整合的背景因素和感知的障碍， 使用实用、稳健的方法评估和推广退伍军人帕金森病患者PC 实施和可持续发展模式(PRISM)。目标2(实施)比较了三者的整合 核心PC组件(高级护理计划、非运动性症状管理以及退伍军人和护理 合作伙伴心理社会支持)进入接受PD专科护理的退伍军人的护理中，使用“被动” (教育/临床工具+反馈报告)与“主动”(被动+辅导)策略。方法论： QUERI实施路线图(Pre-implementation-&gt；Implementation-&gt；Sustainment)指导建议的 运用以理论为基础的实施框架对项目进行干预和数据分析。 干预将使用PD部位的协变量约束群集随机化进行 实施战略和RE-AIM(REACH有效性采用实施维护) 框架将被用来了解促进和干扰成功实施的因素。这个 初步分析将比较所有三个核心PC组件集成到患有PD的退伍军人的护理中 在随机选择被动策略与主动策略的站点之间。将进行半结构化面试 与现场冠军、退伍军人/关怀合作伙伴和参与现场的领导力合作。下一步：目标3 (持续)专注于完善干预措施，以支持、优化、纵向扩展和横向扩展PC 通过将目标1中确定的背景因素与观察到的实施成功和 被动和主动实施战略的预算影响分析结果，以支持PC作为 帕金森病护理标准。这些数据将用于细化实施战略，发展企业-- 对PC集成感兴趣的其他子专业制定广泛的实施计划并提供相关策略。

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.