PRAGMATIC TRIAL TO IMPROVE COMMUNICATION FOR PRIMARY CARE PATIENTS WITH ADRD

改善 ADRD 初级保健患者沟通的务实试验

基本信息

批准号：
10223590
负责人：
SYDNEY MORSS DY
金额：
$ 134.64万
依托单位：
JOHNS HOPKINS 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 2023-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10223590
关键词：
Access to Information Adult Advance Care Planning Advance Directives Age Alzheimer&apos s disease diagnosis Alzheimer&apos s disease related dementia Attention Behavior Therapy Bereavement Caring Cause of Death Clinic Cluster randomized trial Communication Community Physician Continuity of Patient Care Data Analyses Decision Making Diagnosis Effectiveness Electronic Health Record Family Family member Focus Groups Friends Future Goals Health Health system Intervention Interview Lead Letters Logistics Maryland Measures Medical Methods Modeling Monitor Outcome Patient Care Patients Persons Phase Policies Primary Health Care Process Protocols documentation Quality of Care Recommendation Risk Role Services Site Specific qualifier value Surveys Testing Training Value of Life Visit Work contextual factors cost data dissemination decision-making capacity dementia care education resources end of life end of life care experience family support health record improved novel strategies outcome forecast patient health information patient portal payment pragmatic trial preference secondary outcome substituted judgment surrogate decision maker therapy development treatment as usual

项目摘要

A. Abstract- Transition to R33 Phase Alzheimer’s Disease and Related Dementias (ADRD) are among the most profoundly disabling and costly of all health conditions and the 5th leading cause of death. Family and friends (hereafter referred to as family) are at the forefront of managing ADRD across the continuum of care. Clinicians rely on the substituted judgement of family for persons who lack decisional capacity toward the end of life. However, family members are not routinely engaged in discussions about prognosis and are often poorly prepared for surrogate decision- making. Compared to persons without ADRD, persons living with ADRD are less likely to complete an advance directive or formally designate a surrogate decision-maker, placing them at heightened risk for unnecessary suffering and high utilization of burdensome and costly end-of-life care. Advance care planning (ACP) is a communication process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. Early initiation of ACP is an imperative in ADRD care due to the long course of illness and its progressive and devastating effects on decision-making capacity. Little attention has been directed at identifying strategies that improve ACP for persons with ADRD and their family in primary care, which is the most common setting of initial diagnosis and ongoing medical management. Our work establishes the benefit of novel strategies to normalize ACP and engage family in primary care visits and electronic interactions. SHARING Choices (Sharing access to Health records, Agenda setting and RespectING Choices to Engage Families) is a multicomponent communication intervention that seeks to proactively engage family members and support ACP in primary care. SHARING Choices includes 1) a letter from the clinic introducing an initiative to prepare persons and families for ACP, 2) access to a facilitator trained to lead ACP discussions, 3) person-family agenda-setting to align perspectives about the role of family and stimulate discussion about ACP,19 4) facilitated registration to the patient portal (for patient and family) to extend electronic interactions and information access to family, and 5) education and resources about ADRD for clinic staff. Each component improves a range of communication outcomes, but has not previously been applied as an integrated model or studied in persons with ADRD, as we propose. The study encompasses two phases aligned with Stage I (refinement, pilot testing) and Stage IV (effectiveness) of the behavioral intervention development Stage Model and will be conducted in partnership with 2 diverse health systems in the MidAtlantic region. The model has been refined and pilot tested through the R61 mechanism. The 3 aims specified in our original R61/R33 proposal remain the same except that the number of clinics better reflect the current status of primary care for our organizational partners and we have removed secondary outcomes that were to be collected from bereavement surveys due to being logistically infeasible to administer.

A. 摘要-过渡到 R33 阶段阿尔茨海默氏病和相关痴呆症 (ADRD) 是最严重的致残疾病和代价最高的疾病之一健康状况和家人和朋友（以下简称家人）是第五大死因。在整个护理过程中，处于管理 ADRD 前沿的临床医生依赖于替代判断。然而，家庭成员却并非如此。经常参与有关预后的讨论，并且常常对替代决策准备不足与没有 ADRD 的人相比，患有 ADRD 的人完成任务的可能性较小。预先指示或正式指定代理决策者，使他们面临胃肠道风险不必要的痛苦以及繁琐且昂贵的临终关怀的高利用率。预先护理计划 (ACP) 是一个沟通过程，为任何年龄或健康阶段的成年人提供支持了解并分享他们的个人价值观、生活目标以及对未来医疗护理的偏好。由于病程长且进展性，早期开始 ACP 在 ADRD 护理中势在必行很少有人关注对决策能力产生破坏性影响的策略。改善 ADRD 患者及其家人在初级保健机构的 ACP，这是最常见的环境初步诊断和持续的医疗管理。我们的工作确立了使 ACP 正常化并使家庭参与初级保健的新策略的好处访问和电子互动选择（共享健康记录、议程设置）和尊重家庭参与的选择）是一种多成分的沟通干预措施，旨在积极让家庭成员参与并支持 ACP 参与初级保健。分享选择包括 1) 一封信。来自诊所，介绍了一项让个人和家庭为 ACP 做好准备的举措，2) 获得辅导员的帮助接受过领导 ACP 讨论的培训，3) 个人与家庭的议程设置，以协调关于以下角色的观点：家庭并激发有关 ACP 的讨论，19 4) 促进患者门户注册（针对患者和患者）家庭）将电子互动和信息访问扩展到家庭，以及 5）教育和资源关于诊所工作人员的 ADRD，每个组成部分都改善了一系列沟通结果，但并没有改善。正如我们建议的那样，以前曾作为综合模型应用或在 ADRD 患者中进行过研究。包括与第一阶段（细化、试点测试）和第四阶段（有效性）一致的两个阶段行为干预开发阶段模型并将与 2 个不同的健康领域合作进行该模型已通过 R61 机制进行了完善和试点测试。我们最初的 R61/R33 提案中指定的 3 个目标保持不变，只是诊所数量更好反映我们组织合作伙伴初级保健的现状，我们已经删除了二级保健由于在后勤上不可行而需要从丧亲调查中收集的结果。