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.

项目摘要/摘要 阿尔茨海默氏病（AD）和与AD相关的痴呆症（AD/ADRD）是渐进的，衰弱的，并且 对个人和家庭产生重大的末期疾病。 美国的主要死亡原因；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， 很常见，并且随着护理环境之间的过渡而恶化。 AD/ADRD的发展，通常会导致诗意和零散的护理人员 通过疾病的各个阶段提供非凡的情感和实践支持，重新占用 护理人员应变率，抑郁，身体疾病和失业率丧失。 通过解决患者和护理人员的困扰，改善生活质量并减少痛苦 症状，阐明护理目标，并在许多情况下对目标保持一致。 姑息治疗与广泛的OTComes结果有关，包括改善质量 生活，患者和照料者的满意度增加以及节省成本，这些结果尚未看到 实际上，在ADRD中一直是指导临床医生提供高质量的证据 ADRD的姑息治疗。 痴呆疗法护理和姑息治疗 严格的临床行为的研究人员着重于改善人的生活。 使用痴呆症及其护理伙伴生活。 护理临床和利用我们强大的痴呆姑娘护理研究人员网络，我们将 寻求a）在姑息治疗，老年医学和临床神经科学领域确定有希望的多元化研究者 并为在设计，资金，行为，监视/监督方面提供进一步培训的机会 道德表现，并报告姑息治疗临床试验； 严格，设计精良的ADRD-PC临床试验，使研究人员在 基于NIH阶段模型的ADRD-PC临床进行，包括干预开发， 社区参与研究和实施科学； c） 在为期一周的面对面培训计划之前，在支持参与者之前的发展； d）创建一个网络，用于为临床家合作和共享教育资源 痴呆症姑息治疗。