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

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

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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）是最严重的残疾和昂贵的健康状况和第五大死亡原因。家人和朋友（以下称为家庭）在整个护理中管理ADRD的最前沿。临床医生依靠替代判断家庭的家庭，那些在生命的尽头缺乏决策能力的人。但是，家庭成员不是经常进行有关预后的讨论，并且通常为替代决策做好准备 - 制作。与没有ADRD的人相比，与ADRD在一起的人不太可能完成提前指令或正式指定代理决策者，使他们面临着更高的风险不必要的痛苦和对弯曲室的高利用和昂贵的临终护理。预先护理计划（ACP）是一个沟通过程，在任何年龄或健康阶段都支持成人了解并分享他们的个人价值观，人生目标以及关于未来医疗服务的偏好。由于较长的疾病及其进取心和对决策能力的毁灭性影响。很少关注的是确定策略改善ADRD及其家人在初级保健中的ACP，这是最常见的环境最初的诊断和正在进行的医疗管理。我们的工作确立了新颖策略的好处，使ACP正常化并与家人一起参与初级保健访问和电子互动。共享选择（共享对健康记录的访问，议程设置尊重家庭的选择）是一种多组分的交流干预措施，试图主动与家庭成员互动并支持ACP在初级保健中。共享选择包括1）一封信从诊所介绍一项倡议，以使人们和家庭为ACP做好准备，2）访问协助者经过领导ACP讨论的培训，3）与人类家庭的Agernda设定，以使观点保持一致家庭并刺激有关ACP的讨论，19 4）准备了注册患者门户的注册（对于患者和患者家庭）扩展电子互动和信息访问以及5）教育和资源大约是诊所工作人员的事件。每个组件都会改善一系列沟通成果，但没有如我们所建议的，以前被用作集成模型或在ADRD的人中进行了研究。研究包括两个阶段与I期（改进，试点测试）和IV期（有效性）的两个阶段行为干预开发阶段模型，将与2个潜水员健康合作进行中大西洋地区的系统。该模型已经进行了完善并通过R61机制进行了测试。我们原始R61/R33提案中指定的3个目标保持不变，除了诊所的数量更好反映我们组织合作伙伴初级保健的现状，我们删除了次要的由于逻辑上不可行而从丧亲调查中收集的结果。