Palliative care needs and outcomes for dementia patients

痴呆症患者的姑息治疗需求和结果

基本信息

批准号：
9791156
负责人：
VYJEYANTHI S PERIYAKOIL
金额：
$ 76.44万
依托单位：
STANFORD UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2018
资助国家：
美国
起止时间：
2018-09-30 至 2024-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9791156
关键词：
Advance Care Planning Advance Directives Aging Alzheimer&apos s Disease American Area Audiotape Autopsy Biopsy Blood California Caring Cause of Death Cerebrospinal Fluid Cessation of life Clinical Cognitive Communities Consent Consult Decision Making Dementia Disease Distress Documentation Emergency Situation Enrollment Ethnic Origin Evaluation Event Family Feces Future Goals Healthcare Hispanics Hobbies Home environment Home visitation Hospitalization Hour International Intervention Judgment Latino Length of Stay Life Measures Mediator of activation protein Medical Memory Methods Monitor Nurses Nursing Research Outcome Pain Palliative Care Participant Patients Pattern Performance Persons Physicians Population Prevalence Privatization Problem Solving Public Health Quality of life Randomized Randomized Clinical Trials Research Research Training Resort Resources Self Care Sister Skin Standardization Symptoms Telephone Terminal Disease Testing Time Treatment outcome Visit Voice Work World Health Organization aged aging population care systems cohort design end of life experience functional status improved individual patient multidisciplinary neuropsychiatric symptom neuropsychiatry pain symptom palliate palliative patient oriented physical symptom preference psychological symptom public health priorities recruit residence residential care facility symptom management treatment arm treatment as usual usual care arm

项目摘要

The number of people living with dementia worldwide, estimated at 35.6 million in 2010, is set to nearly double every 20 years, reaching 65.7 million in 2030, and 115.4 million in 2050. The World Health Organization has declared dementia a public health crisis and issued a call for global nations to make dementia an international public health priority. Dementia is a terminal disease and was the sixth leading cause of death in the US in 2014. Little is known about the everyday lived experiences and suffering endured over time by patients in the early stages of dementia as most research focuses on patient experiences in the later stages of dementia and often on those who are already institutionalized. However, patients early in the dementia trajectory are beset with distressing symptoms. Three out of four Persons With Dementia (PWD) live in the community (e.g., private residences or non-nursing home residential care facilities). Proactive, patient-centered palliative interventions will better prepare patients and families for the challenges of living with dementia in the community. Implementing early palliative care will facilitate ongoing assessment and management of the distressing symptoms experienced by PWD from very early in the illness trajectory and result in better symptom management, quality of life and timely advance care planning. The Stanford Alzheimer's Disease Research Center (ADRC) was founded in 2015 and we have enrolled a large (and growing) panel of participants whom we follow longitudinally until death. Recognizing that the primary components of palliative care include symptom assessment and management, advance care planning completion and provision of support with end-of-life decision-making, we have designed, refined, and piloted an intervention to be used in the proposed Randomized Clinical Trial (RCT). We will recruit 200 Stanford ADRC participants and randomize 100 each to usual care (UC) or usual care plus an early palliative care intervention (EPC) to be delivered by a nurse over a twelve-month period. The EPC will include one nurse-led palliative consult in a two-hour house call and followed by 11 monthly 30-minute phone assessment plus usual care. The specific aims of the RCT are (i) To determine whether EPC will lead to lower symptom burden, higher quality of life, lesser resource use (e.g. hospital admissions and days, emergency visits) & greater patient activation; (ii) To use all the baseline standardized evaluation measures established by the National Alzheimer's Coordinating Center (NACC) that are routinely collected on our ADRC participants to identify moderators and mediators of treatment outcome and (iii) To use mixed-methods to analyze the audiotapes of the encounters between the research nurse and the patient during the twelve intervention sessions and to assess whether the information that is provided to participants differs by patient ethnicity and cognitive levels. This RCT provides a very rare opportunity to monitor the palliative needs over time of community-dwelling ADRC participants and has great potential to inform future studies by our sister ADRCs on the palliative needs of persons with dementia.

2010 年全球痴呆症患者人数估计为 3560 万人，预计将增加近一倍每20年增加一次，到2030年达到6570万，到2050年达到1.154亿。世界卫生组织已宣布痴呆症为公共卫生危机，并呼吁全球各国将痴呆症列为国际公共卫生危机公共卫生优先。痴呆症是一种绝症，是美国第六大死因 2014 年。人们对于该地区患者的日常生活经历和长期忍受的痛苦知之甚少。痴呆症的早期阶段，因为大多数研究都集中在痴呆症晚期阶段的患者经历通常是针对那些已经被送入收容机构的人。然而，处于痴呆轨迹早期的患者却面临着困境具有令人痛苦的症状。四分之三的痴呆症患者 (PWD) 居住在社区（例如，私人住宅或非疗养院住宿护理设施）。积极主动、以患者为中心的姑息治疗干预措施将使患者和家庭更好地应对痴呆症患者的挑战社区。实施早期姑息治疗将有助于持续评估和管理残疾人士从疾病轨迹的早期就经历了令人痛苦的症状，并导致更好的结果症状管理、生活质量和及时的预先护理计划。斯坦福阿尔茨海默病研究中心 (ADRC) 成立于 2015 年，我们已经招募了大量（且不断增长的）专家小组我们纵向跟踪的参与者直至死亡。认识到姑息治疗的主要组成部分护理包括症状评估和管理、预先护理计划的完成和提供为了支持临终决策，我们设计、完善并试点了一项干预措施，用于拟议的随机临床试验（RCT）。我们将招募 200 名斯坦福 ADRC 参与者并随机分组常规护理 (UC) 或常规护理加早期姑息治疗干预 (EPC) 各 100 次，由担任为期十二个月的护士。 EPC 将包括一次由护士主导的姑息咨询，时间为两小时电话，然后每月进行 11 次 30 分钟的电话评估以及常规护理。 RCT 的具体目标 (i) 确定 EPC 是否会降低症状负担、提高生活质量、减少资源使用（例如入院和住院天数、紧急就诊）以及更大程度的患者激活； (ii) 使用所有基线国家阿尔茨海默病协调中心 (NACC) 制定的标准化评估措施定期收集 ADRC 参与者的数据，以确定治疗结果的调节因素和调节因素 (iii) 使用混合方法分析研究护士和研究护士之间的遭遇的录音带患者在十二次干预期间进行评估，并评估所提供的信息是否参与者因患者种族和认知水平而异。该 RCT 提供了一个非常难得的机会随着时间的推移，监测社区 ADRC 参与者的姑息需求，并且具有巨大的潜力为我们的姊妹 ADRC 未来关于痴呆症患者姑息治疗需求的研究提供信息。