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外伤而患 PD 的风险增加 接触除草剂不仅会导致震颤等运动症状，还会导致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下降有关。 重要的是，门诊姑息治疗 (PC) 可以改善患者的痛苦、残疾和疗养院安置。 通过解决当前与预先护理计划相关的护理差距来护理患者及其护理伙伴， 非运动症状管理、护理人员支持心理社会问题 意义：该部门。 退伍军人事务部 (VA) 具有独特的优势，自 2003 年以来，VA 一直致力于引领 PC 与 PD 护理的整合。 由于持续投资，VA 已在每个 VA 医疗中心配备了配备齐全的 PC 团队。 电脑咨询量稳步增长，从以住院服务为主扩展到以门诊服务为主 第二，专门的 VA 中心，称为帕金森病研究、教育、 以及由国家 VA 组成的临床中心或“PADRECC”和“帕金森病联盟中心” 帕金森病联盟采用中心辐射模型，PADREC 作为中心与联盟一起运作。 为每个 VA 区域网络提供服务的中心作为辐条，以扩大服务范围并作为理想站点 招募整合姑息治疗的创新和影响：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的 PD 管理的领导者。 使用多种策略整合 PC 实施，以改善以患者和护理合作伙伴为中心的关键 PD 的结果，并将更广泛地将 PC 纳入专业护理中。 具体目标：目标 1（预-）。 实施）旨在了解影响整合的背景因素和感知障碍， 使用实用、稳健的方法对诊断患有 PD 的退伍军人进行 PC 评估和传播 实施和可持续性模型 (PRISM) 目标 2（实施）比较了三者的整合。 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 心理社会支持）纳入使用“被动”接受 PD 专业护理的退伍军人的护理 （教育/临床工具+反馈报告）与“主动”（被动+辅导）策略：方法。 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来为干预和数据分析提供信息。 将使用 PD 站点的协变量约束聚类随机化来实施干预 实施策略和 RE-AIM（达到有效性采用实施维护） 将应用框架来了解促进和干扰成功实施的因素。 主要分析将比较所有三个核心 PC 组件在退伍军人护理中的集成 将在随机采用被动与主动策略的站点之间进行半结构化访谈。 与参与地点的现场拥护者、退伍军人/护理合作伙伴和领导层合作：目标 3。 （维持）专注于完善干预措施，以维持、优化、扩展和扩展 PC 通过将目标 1 中确定的背景因素与观察到的实施成功联系起来，患有 PD 的退伍军人 被动与主动实施策略的预算影响分析结果，以支持个人电脑作为 这些数据将用于完善实施策略，制定企业- 广泛的实施计划并为对 PC 集成感兴趣的其他子专业提供策略信息。