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: 10626045
• 负责人: JEAN S KUTNER
• 金额: $ 36.43万
• 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/10626045
• 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; Terminal Disease; 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; care fragmentation; 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 engagement; patient oriented; preference; programs; racial diversity; reduce symptoms; satisfaction; skills; 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.

项目概要/摘要 阿尔茨海默病 (AD) 和 AD 相关痴呆 (AD/ADRD) 是进行性、使人衰弱的疾病， 给个人和家庭带来重大痛苦的绝症1。痴呆症排名第六 美国的主要原因；三分之一的老年人死于痴呆症。 令人痛苦的症状——呼吸短促、疼痛、神经精神症状和喂养问题， 很常见，并且随着疾病的发展轨迹会恶化。护理环境之间的转换随着时间的推移而增加 AD/ADRD 不断进展，通常会导致护理协调不力和支离破碎。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，从而产生高 护理人员紧张、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的痛苦、管理来提高生活质量并减少痛苦 症状，明确护理目标并使目标与偏好保持一致。虽然在很多情况下， 姑息治疗与一系列有益的结果相关，包括提高质量 生活的改善、患者和护理人员满意度的提高以及成本的节省，这些成果尚未见到 始终如一地在 ADRD 中。事实上，缺乏证据来指导临床医生提供高质量的治疗 ADRD 的姑息治疗。该应用程序的总体目标是改善证据基础 通过识别和提高痴呆症和姑息治疗的技能来进行痴呆姑息治疗干预措施 研究人员进行严格的临床试验，重点是改善人们的生活质量 患有痴呆症的人及其护理伙伴。利用我们培训姑息治疗研究人员的经验 护理临床试验并利用我们强大的痴呆症姑息治疗研究人员网络，我们将 寻求 a) 识别姑息治疗、老年病学和临床神经科学领域有前途的多元化研究人员 并提供在设计、资助、行为、监测/监督方面进一步培训的机会， ADRD 姑息治疗临床试验的道德表现和报告； b) 加强管道 严格、精心设计的 ADRD-PC 临床试验，为研究人员提供坚实的基础 基于 NIH 阶段模型进行 ADRD-PC 临床试验，包括干预开发， 社区参与的研究和实施科学； c) 促进持续的职业生涯 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； d) 为临床试验人员创建一个合作和共享教育资源的网络 痴呆症姑息治疗。