Involving Family to Improve Advance Care Planning for Primary Care Patients with ADRD

让家人参与改善 ADRD 初级保健患者的预先护理计划

• 批准号: 10165442
• 负责人: Jennifer L. Wolff
• 金额: $ 75.73万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-08-01 至 2024-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10165442
• 关键词: Access to Information; Adult; Advance Care Planning; Advance Directives; Affect; Age; Alzheimer' s disease related dementia; Attention; Behavior Therapy; Caregiver support; Caregivers; Caring; Cause of Death; Code; Communication; Continuity of Patient Care; Development; Diagnosis; Elderly; Enrollment; Family; Family Caregiver; Family Relationship; Family member; Future; Goals; Health; Hospitalization; Hospitals; Impaired cognition; Individual; Inpatients; Intervention; Lead; Letters; Life Experience; Maintenance; Medical; Medicare; Mental Depression; Modeling; Nurse Practitioners; Nurses; Nursing Homes; Patient Care; Patients; Persons; Phase; Physicians; Policies; Populations at Risk; Primary Health Care; Process; Prognosis; Protocols documentation; Provider; Quality of Care; Randomized; Recommendation; Reporting; Risk; Role; Severities; Social Workers; Testing; Time; Training; United States National Institutes of Health; Value of Life; Work; anxiety symptoms; care preference; clinically relevant; contextual factors; cost; decision-making capacity; dementia care; design; efficacy testing; end of life; end of life care; experience; high risk; improved; interest; mortality risk; novel strategies; patient portal; patient subsets; payment; preference; primary outcome; public health relevance; randomized trial; reduce symptoms; response; secondary outcome; substituted judgment; surrogate decision maker; surrogate decision making; therapy development; treatment as usual

PROJECT SUMMARY 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 caregivers are at the forefront of managing ADRD across the continuum of care but are not routinely included in discussions about prognosis and are often poorly prepared to engage in surrogate decision-making. Compared to older adults without ADRD, those with ADRD are less likely to complete an advance directive and to formally designate a surrogate decision-maker, and are at heightened risk for unnecessary suffering and burdensome end-of-life care. Advance care planning seeks to improve communication about individual values, goals, and preference for care, but typically targets a specific decision, most often in the inpatient hospital or nursing home. Few interventions target advance care planning in primary care, which is where most persons with ADRD are initially diagnosed and medically managed. We propose a developmental study of a multicomponent communication intervention, referred to as SHARE, to proactively engage family caregivers and support advance care planning in primary care. Intervention components include: 1.) a letter from the primary care practice introducing a new advance care planning initiative, 2.) person-family agenda-setting to align patient and family perspectives regarding the role of the family member in primary care interactions and stimulate interest in advance care planning, 3.) ongoing access to a nurse or social worker trained to lead advance care planning conversations, 4.) facilitated registration for the patient portal (for patient and family) to enable and extend electronic interactions and information access to family caregivers. Study Aims reflect two phases that aligned with Stage 1A (refinement) and Stage 1B (testing) of the NIH behavioral intervention development Stage Model. First, we use a user- centered process to refine SHARE with input from primary care stakeholders (physicians, nurse practitioners, social workers, staff), patients with ADRD, and their family caregivers. We will iteratively adapt and pre-test the protocol in 10-15 patient-caregiver dyads at 1 primary care practice. Aim 1 will yield a testable intervention protocol. Second, we will partner with 4 primary care practices to conduct a two-group randomized Stage 1B trial in which 124 dyads receive a control protocol of usual care and 124 dyads receive the intervention protocol. We hypothesize that intervention (versus control) family caregivers will report better quality of communication at 6 months (primary outcome) and among patients who die, that intervention (versus control) patients will experience higher quality end-of-life care and bereaved family caregivers will be better prepared for surrogate decision-making and report fewer symptoms of anxiety and depression (secondary outcomes). We will qualitatively assess the implementation context to identify factors that may affect dissemination of the intervention. Aim 2 will provide critical information and evidence to facilitate subsequent dissemination.

项目摘要 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。家庭护理人员处于管理ADRD的最前沿 在整个护理中，但并未常规地包括在有关预后的讨论中，而且通常很差 准备进行替代决策。与没有ADRD的老年人相比 完成提前指令并正式指定代理决策者的可能性较小，并且是 不必要的痛苦和繁重的临终护理风险增加。预先护理计划寻求 改善有关个人价值观，目标和偏爱护理的沟通，但通常针对 具体决定，通常在住院医院或疗养院。几乎没有干预措施目标预先护理 在初级保健中进行计划，这是大多数ADRD的人最初被诊断和医学诊断的地方 管理。我们建议对多组分交流干预措施的发展研究，称为 分享，积极参与家庭护理人员并支持初级护理的预先护理计划。 干预组件包括：1。）初级保健实践的一封信，引入新的预先护理 计划倡议，2。）与人家庭议程制定，以使患者和家庭观点保持一致 初级保健互动中的家庭成员，并激发了预先护理计划中的兴趣，3。）正在进行 访问受过培训的护士或社会工作者进行预先护理计划对话，4.）促进 患者门户（患者和家庭）的注册以启用和扩展电子相互作用，并且 信息访问家庭护理人员。研究目的反映了与第1A期（改进）一致的两个阶段 NIH行为干预发展阶段模型的第1B期（测试）。首先，我们使用一个用户 - 与初级保健利益相关者的意见（医师，护士从业者， 社会工作者，员工），ADRD患者及其家庭护理人员。我们会迭代地适应和预测试 该方案在1个初级保健实践中的10-15例患者护理人员二元组中。 AIM 1将产生可测试的干预 协议。其次，我们将与4种初级保健实践合作进行两组随机阶段1B 124个二元组获得了通常护理的控制方案，而124个二元组接受了干预 协议。我们假设干预措施（与控制）家庭护理人员将报告更好的质量 在6个月（主要结果）和死亡的患者中进行沟通，该干预措施（相对于对照） 患者将体验更高质量的临终护理，丧亲的家庭照顾者将做好准备 对于替代决策，报告焦虑和抑郁症的症状较少（次要结果）。 我们将定性评估实施环境，以确定可能影响传播的因素 干涉。 AIM 2将提供关键信息和证据，以促进随后的传播。