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由于创伤性头部损伤而患PD的风险增加 以及接触除草剂PD既会引起运动症状，如震颤，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 痛苦残疾和养老院安置重要的是，门诊姑息治疗（PC）可以改善 通过解决与预先护理规划相关的护理中的当前差距来护理患者及其护理伙伴， 非运动症状管理、照顾者支持和心理社会问题。意义：部门 退伍军人事务部（VA）是唯一的定位，导致PC整合到PD护理。自2003年以来， 每个退伍军人医疗中心都有配备齐全的PC团队。由于这种持续的投资，VA 经历了PC咨询量的稳步增长，从主要的住院服务扩展到 门诊病人电脑程序第二，专门的VA中心，称为帕金森病研究，教育， 临床中心或“PADRECC”和“帕金森病联盟中心”组成了国家VA 帕金森氏病联盟在一个中心和辐条模型。PADRECs作为枢纽与Consortium合作 服务于每个VA区域网络的中心作为辐条，以扩展服务范围并作为理想的站点 为姑息治疗的整合招募人员。创新与影响：超过170，000名退伍军人受到PD的影响， VA有机会成为提供最先进PD管理的领导者。该项目将 采用多种实施策略整合PC，以改善以关键患者和护理伙伴为中心的 PD的结果，并将更广泛地将PC整合到专业护理中。具体目标：目标1（ 实施）旨在了解影响整合的背景因素和感知障碍， 评估和传播PC的退伍军人诊断为PD使用实用，稳健 实施和可持续性模型（PRISM）。目标2（实施）比较了三个 核心PC组件（高级护理计划、非运动症状管理和退伍军人和护理 合作伙伴心理社会支持）纳入使用“被动” （教育/临床工具+反馈报告）与“主动”（被动+辅导）策略。方法：The QUERI实施路线图（实施前->实施->维持）指导拟议的 项目使用基于理论的实施框架，为干预和数据分析提供信息。 将使用协变量约束的PD研究中心群集随机化进行干预治疗， RE-AIM（Reach Effectiveness Adoption Implementation Maintenance） 框架将用于了解促进和干扰成功实施的因素。的 主要分析将比较所有三个核心PC组件与PD退伍军人护理的整合 随机分配至被动与主动策略的研究中心之间的差异。将进行半结构化面试 与现场冠军，退伍军人/护理合作伙伴和参与现场的领导。下一步：目标3 （维持）的重点是完善干预措施，以维持、优化、扩大和扩大PC， 通过将目标1中确定的背景因素与观察到的实施成功联系起来， 被动与主动实施战略的预算影响分析结果，以支持PC作为 PD护理标准。这些数据将用于完善实施战略，发展企业- 广泛的实施计划，并告知对PC集成感兴趣的其他子专业的策略。

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.