The Hospice Advanced dementia Symptom Management and Quality of Life Trial (HAS-QOL)

临终关怀晚期痴呆症症状管理和生活质量试验 (HAS-QOL)

• 批准号: 10474598
• 负责人: Abraham Aizer Brody
• 金额: $ 126.52万
• 依托单位: NEW YORK UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10474598
• 关键词: Adoption; Advanced Malignant Neoplasm; Affect; Age; Aggressive behavior; Agitation; Alzheimer' s Disease; Analgesics; Antipsychotic Agents; Area; Award; Back; Behavioral Symptoms; Caregiver support; Caregivers; Caring; Cessation of life; Communities; Dementia; Dementia caregivers; Diagnosis; Discipline of Nursing; Disease; Effectiveness; Ensure; Evidence based intervention; Evidence based practice; Extramural Activities; Feedback; Geriatric Nursing; Goals; Health system; Healthcare; Home; Home Care Services; Home Health Aides; Home Health Care Agencies; Hospice Care; Hospice Programs; Hospital Mortality; Hour; Incidence; Infrastructure; Inpatients; Institutes; Institutionalization; Intervention; Length of Stay; Level of Evidence; Life; Long-Term Care; Measurement; Measures; Mental Depression; Modeling; Nursing Homes; Outcome; Pain; Pain management; Patients; Persons; Pharmacology; Phase; Population; Pragmatic clinical trial; Program Effectiveness; Protocols documentation; Psychosocial Assessment and Care; Public Health; Quality of Care; Quality of life; Randomized; Reproducibility; Resort; Safety; Serious Adverse Event; Site; Sleep disturbances; Statistical Methods; Symptoms; System; Testing; Training; Visit; Work; advanced dementia; base; burden of illness; burnout; care systems; clinical care; comorbidity; data management; end of life; end of life care; evidence base; falls; hospice environment; human data; human subject; implementation fidelity; implementation intervention; improved; innovation; inpatient service; intervention refinement; member; patient home care; pilot test; pragmatic trial; primary caregiver; primary outcome; programs; psychological symptom; respite care; satisfaction; secondary outcome; symptom management; trial design; working group

As the population ages, the incidence rate of Alzheimer's Disease and Related Disorders (dementia) is expected to triple. The National Alzheimer's Plan recognizes that while the number of persons with dementia (PWD) is increasing substantially, the healthcare and long term care systems are unprepared to provide high quality, effective and efficient care to the PWD and their caregivers. PWD often have many behavioral and psychological symptoms of dementia (BPSD) including agitation, depression and sleep disturbances, that affect both the quality of life of the PWD and the caregiver. Unfortunately, due to a lack of programs to insert evidence-based care into the community, and hospice system specifically, PWD receive inappropriate and even harmful care. We have developed the Dementia Symptom Management at Home (DSM-H) Program to implement dementia friendly care for PWD and their caregivers in the community. Initially developed for use in home healthcare, we have modified the program for use in hospice. The DSM-H Hospice Edition is a systems level change program that includes workforce training, and agency level workflow changes. Through the Hospice Advanced Dementia Symptom Management and Quality of Life (HAS-QOL) Trial, in the R61 phase, we will: Aim 1: Establish the infrastructure necessary for implementing a pragmatic clinical trial of the DSM-H Hospice Edition. Aim 2: Further tailor the DSM-H program specifically for hospice IDT members caring for PWD receiving end of life care and adapt for wide-scale implementation in hospice. Aim 3: Pilot test the complete protocol in 2 hospice agencies and refine the protocol further based on feedback from the pilot agencies. Following successful completion of the milestones at the end of the R61 year surrounding feasibility, applicability, and fidelity, we will move forward with the R33 phase where, we will: Aim 4: Conduct a pragmatic, randomized stepped wedged cluster RCT of the Dementia Symptom Management at Home Program Hospice Edition with advanced dementia patients living at home (N=30/agency per month) in 25 hospice agencies comparing antipsychotics (Primary Outcome) and analgesic use (Secondary Outcome) before and after implementation. Aim 5: Compare the rates of hospice continuous, inpatient and temporary respite care hours provided, and rate of permanent institutionalization in a nursing home prior to and after implementation (Secondary Outcomes). Aim 6: Assess care satisfaction of the bereaved primary caregiver. (Secondary Outcome) Exploratory Aim 7: Assess the spillover effects of the DSM- H on hospice patients who are identified as having dementia as a comorbidity, and advanced dementia patients who are living in nursing homes. This is an innovative proposal as it would be the first large-scale pragmatic trial in a hospice focused on PWD and their caregivers, and has a strong scientific premise, rigor and potential for reproducibility. Following completion of the trial, should the findings show that the DSM-H Hospice Edition is effective in improving quality of care and has high adoption and implementation fidelity, we will develop a technical assistance center through the Hartford Institute for Geriatric Nursing to disseminate the model of care.

随着人口老龄化，阿尔茨海默病和相关疾病(痴呆症)的发病率预计会上升 要翻三倍。国家阿尔茨海默氏症计划认识到，虽然痴呆症(PWD)的人数是 大幅增加，医疗保健和长期护理系统没有准备好提供高质量， 向残疾人士及其照顾者提供有效和高效的护理。PWD往往有许多行为和心理上的问题 痴呆症(BPSD)的症状，包括烦躁、抑郁和睡眠障碍，这些都会影响到 残障人士和照顾者的生活。不幸的是，由于缺乏将循证护理纳入其中的计划 社区，特别是临终关怀系统，残疾人得到了不适当的甚至有害的护理。我们有 开发家庭痴呆症状管理(DSM-H)计划以实现对痴呆症的友好 在社区中照顾残疾人士和他们的照顾者。最初开发用于家庭医疗保健，我们有 修改了程序以用于临终关怀。DSM-H临终关怀版是一个系统级别更改计划， 包括员工培训和机构级别的工作流更改。通过临终关怀治疗晚期痴呆症 症状管理和生活质量(HAS-QOL)试验，在R61阶段，我们将：目标1：建立 实施DSM-H临终关怀版实用临床试验所需的基础设施。目标2：更进一步 为照料接受临终关怀的残障人士量身定做DSM-H计划 适应临终关怀的大规模实施。目标3：在两家临终关怀机构试行完整的方案 并根据试点机构的反馈进一步完善议定书。在成功完成 R61年末的里程碑围绕可行性、适用性和保真度，我们将继续前进 在R33阶段，我们将：目标4：实施务实、随机的阶梯式楔形集群RCT 晚期痴呆患者生活在家中的痴呆症状管理计划临终关怀版 在家中(N=30/机构每月)在25个临终关怀机构比较抗精神病药物(主要结果)和 实施前后止痛药使用情况(次要结果)。目标5：比较临终关怀的比率 提供持续、住院和临时缓解护理的时间，以及在 疗养院实施前后(次级结果)。目标6：评估患者的护理满意度 失去了主要照顾者。(次要结果)探索性目标7：评估需求侧管理的溢出效应-- H被确认为痴呆症共病的临终关怀患者和晚期痴呆症患者 他们住在养老院。这是一项创新的提议，因为这将是第一次大规模的务实试验 在专注于PWD及其照顾者的临终关怀中，并具有强大的科学前提、严谨和潜在的 再现性。试验完成后，如果结果显示DSM-H临终关怀版 有效地改善护理质素，并具有高度的采纳和执行保真度，我们会发展一套 技术援助中心通过哈特福德老年护理研究所传播护理模式。

项目成果

A Scoping Review of Dementia Symptom Management in Persons with Dementia Living in Home-based Settings.

生活在家庭环境中的痴呆症患者的痴呆症状管理的范围评论。

• DOI: 10.1007/s13670-019-00307-4
• 发表时间: 2019-12
• 期刊: Current geriatrics reports
• 影响因子: 1.2
• 作者: Schneider CE;Bristol AA;Brody AA
• 通讯作者: Brody AA

A Pilot Observational Exploratory Study of Well-Being in Hospice Interdisciplinary Team Members.

• DOI: 10.1177/10499091211023480
• 发表时间: 2022-03
• 期刊: AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE
• 影响因子: 1.9
• 作者: Schneider, Catherine;Bristol, Alycia;Ford, Ariel;Lin, Shih-Yin;Brody, Abraham A.;Stimpfel, Amy Witkoski
• 通讯作者: Stimpfel, Amy Witkoski

Aliviado Mobile App for Hospice Providers: A Usability Study.

• DOI: 10.1016/j.jpainsymman.2021.07.019
• 发表时间: 2022-01
• 期刊: Journal of pain and symptom management
• 影响因子: 4.7
• 作者: David D;Lin SY;Groom LL;Ford A;Brody AA
• 通讯作者: Brody AA

Potential sources of moral distress during COVID-19: Perspectives of hospice interdisciplinary teams.

COVID-19 期间道德困扰的潜在来源：临终关怀跨学科团队的观点。

• DOI: 10.1017/s1478951522000633
• 发表时间: 2023
• 期刊: Palliative & supportive care
• 影响因子: 2.2
• 作者: Jones,Tessa;Lin,Shih-Yin;Durga,Aditi;Luth,ElizabethA;Lassell,RebeccaKF;Brody,AbrahamA
• 通讯作者: Brody,AbrahamA

Supporting dementia family care partners during COVID-19: Perspectives from hospice staff.

• DOI: 10.1016/j.gerinurse.2022.08.003
• 发表时间: 2022-09
• 期刊: GERIATRIC NURSING
• 影响因子: 2.7
• 作者: Lin, Shih-Yin;Jones, Tessa;David, Daniel;Lassell, Rebecca K. F.;Durga, Aditi;Convery, Kimberly;Ford, Ariel;Brody, Abraham A.
• 通讯作者: Brody, Abraham A.