Palliative Care as a Parkinson's Disease Standard of Care

姑息治疗作为帕金森病的护理标准

• 批准号: 10753418
• 负责人: Cari Renee Levy
• 金额: --
• 依托单位: VA EASTERN COLORADO HEALTH CARE SYSTEM
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-10-01 至 2027-09-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10753418
• 关键词: Address; Advance Care Planning; Affect; Age; American; Caregiver support; Caregivers; Caring; Cause of Death; Clinical; Complex; Consultations; Craniocerebral Trauma; Data; Data Analyses; Dementia; Diagnosis; Disease Management; Distress; Education; Emotional; Evaluation; Exposure to; Family; Feedback; Goals; Growth; Herbicides; Individual; Influentials; Intervention; Interview; Investments; Lead; Leadership; Link; Medical center; Mental Depression; Methodology; Modeling; Nerve Degeneration; Neurologist; Neurology; Nursing Homes; Outcome; Outpatients; Pain; Palliative Care; Parkinson Disease; Patient Care; Patients; Positioning Attribute; Practical Robust Implementation and Sustainability Model; Provider; Psychoses; Psychosocial Assessment and Care; Psychosocial Influences; Quality of life; Randomized; Reach, Effectiveness, Adoption, Implementation, and Maintenance; Reporting; Research; Resources; Risk; Services; Site; Specialist; Specialized Center; Spirituality; Structure; Symptoms; Training; Travel; Tremor; United States Department of Veterans Affairs; Veterans; associated symptom; budget impact; care preference; clinical center; contextual factors; coping; disability; experience; future implementation; implementation barriers; implementation efforts; implementation facilitators; implementation framework; implementation outcomes; implementation strategy; improved; innovation; inpatient service; interest; intervention delivery; intervention refinement; medical specialties; motor symptom; non-motor symptom; primary outcome; programs; recruit; scale up; standard of care; success; symptom management; theories; tool

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.

背景：帕金森氏病（PD）是第二常见的神经退行性疾病 60岁以上的个体，由于头部受伤，退伍军人的PD风险增加 和暴露于除草剂。 PD引起两种运动症状，例如震颤，但也令人痛苦的非运动症状 抑郁和疼痛等症状。这些症状与护理人员的生活质量降低有关 苦难，残疾和护理家庭安置。重要的是，门诊姑息治疗（PC）可以改善 通过解决与预先护理计划有关的当前护理差距，对患者及其护理伙伴的护理， 非运动症状管理，护理人员支持和社会心理问题。意义：部门 退伍军人事务（VA）的独特位置可以将PC集成到PD护理中。首先，自2003年弗吉尼亚州以来 在每个VA医疗中心，都要求配备齐全的PC团队。由于这项持续投资，VA有 从主要住院服务到增长的PC咨询量稳定增长 门诊PC程序。第二，专门的VA中心被称为帕金森氏病研究，教育， 以及临床中心或“ Padrecc”和“帕金森氏病联盟中心”包括国家弗吉尼亚州国家 帕金森氏病在枢纽和讲话模型中。 PADRECCS作为带有财团的枢纽 为每个VA区域网络提供服务的中心，以扩大服务范围并作为理想站点 招募姑息治疗的整合。创新与影响：超过170,000名受PD影响的退伍军人 弗吉尼亚州有机会成为提供最先进的PD管理的领导者。这个项目将 使用多种实施策略集成了PC，以改善关键患者和以护理伙伴为中心的PC PD的结果将更广泛地将PC集成到专业护理中。具体目的：目标1（预 实施）试图了解影响整合的情境因素和感知的障碍， 使用实用，稳健的PC评估和传播PC的PC诊断为PD的退伍军人 实施和可持续性模型（PRISM）。 AIM 2（实施）比较了三个的集成 核心PC组件（预先护理计划，非运动症状管理以及退伍军人和护理 合作伙伴的心理社会支持）使用“被动”接受PD专业护理的退伍军人护理 （教育/临床工具 +反馈报告）与“主动”（被动 +教练）策略。方法： queri实施路线图（实施前 - >实施 - >维持）指导拟议的 通过使用基于理论的实施框架的项目来告知干预和数据分析。 干预输送将使用PD位点的协变约束群集随机化到达 实施策略和RE-AIM（达到有效性采用实施维护） 框架将应用于理解促进和干扰成功实施的因素。这 初级分析将比较所有三个核心PC组件的集成与PD的退伍军人的护理 在随机分配到被动与主动策略的站点之间。将进行半结构化访谈 与现场冠军，退伍军人/护理合作伙伴以及参与网站的领导。下一步：目标3 （维持）的重点是完善干预措施，以维持，优化，扩展和扩展PC 通过将AIM 1中确定的上下文因素与观察到的实施成功联系起来，具有PD的退伍军人 预算影响分析被动与主动实施策略的结果，以支持PC作为一个 PD护理标准。这些数据将用于完善实施策略，开发企业 - 广泛的实施计划和对PC集成感兴趣的其他子专业的策略。