Diversifying and Strengthening Dementia Palliative Care Clinical Trials

多样化和加强痴呆症姑息治疗临床试验

• 批准号: 10409239
• 负责人: JEAN S KUTNER
• 金额: $ 37.11万
• 依托单位: MASSACHUSETTS GENERAL HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-06-01 至 2027-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10409239
• 关键词: Address; Aggressive behavior; Alzheimer' s Disease; Alzheimer' s disease related dementia; Anthropology; Applications Grants; Caregiver Burden; Caregivers; Caring; Cause of Death; Clinical; Clinical Trials; Clinical Trials Design; Collaborations; Conduct Clinical Trials; Confusion; Cost Savings; Dementia; Discipline; Discipline of Nursing; Disease; Distress; Elderly; Emotional; Employment; Engineering; Ethics; Faculty; Family; Family Caregiver; Foundations; Functional disorder; Funding; Geography; Geriatrics; Goals; Individual; International; Intervention; Literature; Malignant Neoplasms; Medical; Medicine; Mental Depression; Mentors; Modeling; Monitor; Neurosciences; Organ; Outcome; Pain; Palliative Care; Paranoia; Participant; Patients; Performance; Persons; Psychology; Quality of life; Reporting; Research; Research Personnel; Shortness of Breath; Social Work; Societies; Sociology; Symptoms; Syndrome; Testing; Training; Training Programs; United States; United States Agency for Healthcare Research and Quality; United States National Academy of Sciences; United States National Institutes of Health; advanced dementia; base; care seeking; career development; caregiver strain; cohort; collaboratory; community engaged research; dementia care; design; education resources; ethnic diversity; evidence base; experience; feeding; human old age (65+); implementation science; improved; investigator training; neuropsychiatric symptom; next generation; palliative; patient oriented; preference; programs; racial diversity; reduce symptoms; satisfaction; sound; symptom management; therapy development

Project Summary/Abstract Alzheimer’s disease (AD) and AD-related dementias (AD/ADRD) are progressive, debilitating, and terminal illnesses1 that cause significant suffering to individuals and families. Dementia is the sixth leading cause of death in the United States; 1 in 3 older adults die with a dementia syndrome. Distressing symptoms -- shortness of breath, pain, neuropsychiatric symptoms, and feeding problems, are common, and worsen over the disease trajectory. Transitions between care settings increase as AD/ADRD progresses, often resulting in poorly coordinated and fragmented care. Family caregivers provide extraordinary emotional and practical support through all stages of illness, resulting in high rates of caregiver strain, depression, physical illness, and loss of employment. Palliative care seeks to improve quality of life and reduce suffering by addressing patient and caregiver distress, managing symptoms, clarifying goals of care and aligning goals with preferences. While in many conditions, palliative care has been associated with a wide array of beneficial outcomes including improved quality of life, increased patient and caregiver satisfaction, and cost saving, these outcomes have not been seen consistently in ADRD. In fact, there is a dearth of evidence to guide clinicians in providing high-quality palliative care in ADRD. The overall objective of this application is to improve the evidence base for dementia palliative care interventions by identifying and upskilling dementia and palliative care investigators in the conduct of rigorous clinical trials focused on improving quality of life for persons living with dementia and their care partners. Using our experience of training researchers in palliative care clinical trials and leveraging our strong network of dementia palliative care investigators, we will seek to a) Identify promising diverse investigators in palliative care, geriatrics and clinical neurosciences and provide the opportunity for further training in the design, funding, conduct, monitoring/oversight, ethical performance, and reporting of ADRD palliative care clinical trials; b) Enhance the pipeline of rigorous, well designed ADRD-PC clinical trials by equipping investigators with a strong foundation in the conduct of ADRD-PC clinical trials based on the NIH Stage Model, including intervention development, community-engaged research and implementation science; c) Promote ongoing professional career development by supporting participants before, during an after a week-long in-person training program; and d) Create a network for collaboration and sharing of educational resources for clinical trialists in dementia palliative care.

项目总结/摘要 阿尔茨海默病（AD）和AD相关痴呆（AD/ADRD）是进行性的、使人衰弱的，并且 对个人和家庭造成重大痛苦的绝症1。痴呆症是第六种 在美国，痴呆症是导致死亡的主要原因;三分之一的老年人死于痴呆综合症。 令人痛苦的症状-呼吸急促，疼痛，神经精神症状和喂养问题， 是常见的，并随着疾病的发展而恶化。护理机构之间的过渡增加， AD/ADRD进展，通常导致协调不良和分散的护理。家庭照顾者 在疾病的各个阶段提供非凡的情感和实际支持， 照顾者紧张、抑郁、身体疾病和失业的比率。姑息治疗旨在 通过解决患者和护理人员痛苦，管理 症状，澄清护理目标，并将目标与偏好相结合。虽然在许多情况下， 姑息治疗与广泛的有益结果有关，包括质量的提高 提高患者和护理人员的满意度，并节省成本，这些结果还没有看到 一直在ADRD。事实上，缺乏证据来指导临床医生提供高质量的 ADRD的姑息治疗该应用程序的总体目标是改善以下方面的证据基础： 通过识别和提高痴呆症和姑息治疗的技能进行痴呆症姑息治疗干预 研究人员在进行严格的临床试验，重点是改善生活质量的人 与痴呆症患者及其护理伙伴一起生活。利用我们在姑息治疗方面培训研究人员的经验， 护理临床试验和利用我们强大的痴呆症姑息治疗研究者网络，我们将 寻求a）确定姑息治疗、老年病学和临床神经科学方面有前途的各种研究人员 并提供机会，在设计、供资、开展、监测/监督、 伦理表现和ADRD姑息治疗临床试验的报告; B）加强 严格，精心设计的ADRD-PC临床试验，为研究者提供了坚实的基础， 根据NIH阶段模型开展ADRD-PC临床试验，包括干预措施的开发， 社区参与的研究和实施科学; c）促进正在进行的职业生涯 通过在为期一周的面对面培训计划之前和之后支持参与者来发展; 以及d）为临床试验人员建立一个合作和分享教育资源的网络， 痴呆姑息治疗