Palliative Care for People Living at Home with Advancing Dementia and Their Caregivers

为患有晚期痴呆症的居家患者及其护理人员提供姑息治疗

• 批准号: 10628031
• 负责人: Krista Lyn Harrison
• 金额: $ 14.39万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-07-15 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10628031
• 关键词: Address; Advance Care Planning; Advance Directives; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; Applications Grants; California; Caregiver support; Caregivers; Caring; Cessation of life; Characteristics; Clinical Research; Communication; Data; Data Set; Dementia; Development; Dimensions; Disease; Distress; Doctor of Philosophy; Effectiveness of Interventions; Elderly; Family; Fellowship; Focus Groups; Fostering; Future; Geriatrics; Goals; Health; Health Policy; Health Services; Home; Hospitalization; Individual; Intervention; Interview; Knowledge; Leadership; Level of Evidence; Life; Life Experience; Link; Medical; Medicare; Medicare claim; Memory; Mentored Research Scientist Development Award; Mentors; Methods; Neurologist; Neurology; Nursing Homes; Pain; Palliative Care; Palliative Medicine; Participant; Patients; Persons; Policies; Population; Prognosis; Prospective cohort; Public Health; Qualitative Methods; Quality of Care; Quality of life; Research; Research Personnel; Resources; Risk Factors; San Francisco; Scholars Program; Series; Source; Specialist; Statistical Methods; Structure; Symptoms; System; Testing; Time; Training; Translating; United States National Institutes of Health; Universities; Work; advanced dementia; beneficiary; career development; caregiving; clinical care; clinical practice; dementia care; design; efficacious intervention; efficacy testing; end of life; end of life care; evidence base; experience; hospice environment; implementation science; improved; informal caregiver; medical specialties; memory care; modifiable risk; mortality; multidisciplinary; multiple data types; nursing home length of stay; palliative; professor; social; tool; trend; usability

Project Summary/Abstract This is an application for a K01 award for Krista Lyn Harrison, PhD, whose research focuses on improving life for older adults with Alzheimer’s disease and related dementias (ADRD) and their informal caregivers. Dr. Harrison is a health services and policy researcher and Assistant Professor in the Division of Geriatrics at the University of California, San Francisco (UCSF). Dr. Harrison has 12-years of experience in qualitative methods and led the research enterprise of a large hospice prior to completing a UCSF aging research fellowship and implementation science certificate. Through the activities proposed in this application, Dr. Harrison will strengthen and address gaps in her experience through a training plan focused on: a) advanced statistical methods in linked datasets, b) ADRD clinical care and research, and c) translating mixed-methods data into ADRD interventions. Resources to foster her career development include UCSF’s nationally-recognized Division of Geriatrics, Memory and Aging Center, Institute for Health Policy Studies, and K Scholar’s program, Dr. Harrison has assembled an extraordinary multidisciplinary team with extensive expertise. Alzheimer’s disease and related dementias are progressive incurable illnesses causing significant public health burden. Palliative care focuses on reducing suffering and improving quality of life by attending to the multi-dimensional sources of distress for seriously ill individuals and families. Evidence for quality palliative care for advanced ADRD comes primarily from research in nursing homes. For the more than 700,000 older adults with advanced Alzheimer’s disease who die at home each year, clinicians lack population-level evidence to guide caregivers and patients in anticipating and planning for disease changes. The proposed K01 will address critical knowledge gaps and develop a toolkit of resources to support basic palliative care provided by neurologists. Dr. Harrison will first use a nationally-representative dataset to longitudinally examine factors associated with mortality and nursing home stay among people living at home with severe and advancing ADRD. Second, she will use semi-structured interviews with older adults living at home with ADRD, current and bereaved caregivers to understand palliative and end-of-life experiences and opportunities to improve palliative care for ADRD. Third, Dr. Harrison will work with multiple stakeholders to refine and assess the feasibility of a toolkit of basic palliative care resources for use in neurology clinical practice (such as an assessment checklist, evidence-based strategies for discussing serious illness prognosis and advance care planning adapted for ADRD, referral and billing guides, and summarized evidence from Aims 1 and 2 on living at home with ADRD to inform anticipatory guidance). The goal of this toolkit is to improve neurologists’ communication with older adults living at home with advancing ADRD and/or their informal caregivers. The proposed research will provide Dr. Harrison with the preliminary data, training, and experience to support future competitive independent R-series applications to test the efficacy and effectiveness of her intervention.

项目摘要/摘要 这是Krista Lyn Harrison博士的K01奖的申请，其研究重点是改进 老年人患有阿尔茨海默氏病和相关痴呆症（ADRD）及其非正式护理人员的生活。博士 哈里森（Harrison 加利福尼亚大学旧金山（UCSF）。哈里森博士拥有定性方法的12年经验 并在完成UCSF老化研究奖学金和 实施科学证书。通过本申请中提出的活动，哈里森博士将 通过重点关注的培训计划来加强和解决她的经验差距：a）高级统计数据 链接数据集中的方法，b）ADRD临床护理和研究，c）将混合方法数据转化为 ADRD干预措施。促进她职业发展的资源包括UCSF的全国认可 老年医学，记忆和老化中心，卫生政策研究所和K学者计划， 哈里森博士已经组建了一个具有广泛专业知识的非凡多学科团队。 阿尔茨海默氏病和相关痴呆症是渐进性无法治愈的疾病，引起了大量公众 健康伯恩。姑息治疗的重点是通过参与来减少苦难和改善生活质量 重病的个人和家庭的多维苦难来源。质量姑息的证据 高级ADRD的护理主要来自护士房屋的研究。对于超过700,000的年龄较大 每年在家里死亡的高级阿尔茨海默氏病的成年人缺乏人口水平的证据 指导护理人员和患者预期和计划疾病的变化。拟议的K01将 解决关键知识差距并开发资源工具包，以支持提供的基本姑息治疗 神经科医生。哈里森博士将首先使用全国代表性的数据集来纵向研究因素 与死亡率和护士住宅有关 adrd。其次，她将对与Adrd一起住在家里的老年人进行半结构化访谈 和丧亲的护理人员了解姑息和临终的经验和改善 Adrd的姑息治疗。第三，哈里森博士将与多个利益相关者合作，以完善和评估 用于神经病学临床实践的基本姑息治疗资源工具包的可行性（例如 评估清单，基于证据的策略，讨论严重疾病预后和预先护理 计划适合ADRD，推荐和计费指南，并总结了目标1和2的证据 在ADRD的家中，以告知预期指导）。该工具包的目的是改善神经科医生的 与居住在家里的老年人进行交流，并推进ADRD和/或其非正式护理人员。这 拟议的研究将为哈里森博士提供支持的初步数据，培训和经验以支持 未来竞争性的独立R系列应用程序，以测试其干预的有效性和有效性。

项目成果

Understanding the Daily Experiences and Perceptions of Homebound Older Adults and Their Caregivers: A Qualitative Study.

• DOI: 10.1177/0733464821990171
• 发表时间: 2021-12
• 期刊: Journal of applied gerontology : the official journal of the Southern Gerontological Society
• 作者: Mickler AK;Leff B;Eaton England A;Garrigues SK;Schuchman M;Perissinotto C;Ritchie CS;Harrison KL;Sheehan OC
• 通讯作者: Sheehan OC

Health Care Costs Associated With Hospice Use For People With Dementia In The US.

在美国，与痴呆症患者临终关怀服务相关的医疗保健费用。

• DOI: 10.1377/hlthaff.2023.00036
• 发表时间: 2023
• 期刊: Health affairs (Project Hope)
• 作者: Aldridge,MelissaD;Hunt,LaurenJ;Harrison,KristaL;McKendrick,Karen;Li,Lihua;Morrison,RSean
• 通讯作者: Morrison,RSean

Making Space for Grief in Academia.

在学术界为悲伤腾出空间。

• DOI: 10.1001/jama.2021.13539
• 发表时间: 2021
• 期刊: JAMA
• 作者: Harrison,KristaLyn

The Hidden Curriculum Of Hospice: Die Fast, Not Slow.

• DOI: 10.1377/hlthaff.2021.00259
• 发表时间: 2021-05
• 期刊: Health affairs (Project Hope)
• 作者: Harrison KL

Unanticipated Therapeutic Value of the Patient-Centered Outcomes Research Institute (PCORI) Stakeholder Engagement Project for Homebound Older Adults.

• DOI: 10.1016/j.jamda.2020.03.013
• 发表时间: 2020-08
• 期刊: Journal of the American Medical Directors Association
• 影响因子: 7.6
• 作者: Sheehan OC;Ritchie CS;Garrett SB;Harrison KL;Mickler A;Eaton England AL;Sharma Basyal P;Garrigues SK;Leff B
• 通讯作者: Leff B