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: 10651679
• 负责人: Jennifer L. Wolff
• 金额: $ 74.65万
• 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 2025-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10651679
• 关键词: Access to Information; Adult; Advance Care Planning; Advance Directives; Affect; Age; Alzheimer' s disease patient; Alzheimer' s disease related dementia; Attention; Behavior Therapy; Caregivers; Caring; Cause of Death; Code; Communication; Continuity of Patient Care; Development; Diagnosis; Elderly; Electronics; Enrollment; Family; Family Caregiver; Family Relationship; Family member; Future; Goals; Health; Hospitalization; Hospitals; Impaired cognition; Individual; Inpatients; Intervention; Lead; Letters; Life; Life Experience; Maintenance; Medical; Medicare; Modeling; Nurse Practitioners; Nurses; Nursing Homes; Outcome; Patient Care; Patients; Persons; Phase; Physicians; Policies; Populations at Risk; Primary 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; Work; anxiety symptoms; care preference; clinically relevant; contextual factors; cost; decision-making capacity; dementia care; depressive symptoms; design; efficacy testing; end of life; end of life care; experience; high risk; implementation context; implementation evaluation; improved; interest; mortality risk; novel strategies; patient portal; patient subsets; payment; preference; primary care clinician; primary care patient; primary care practice; primary care visit; 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.

项目概要 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 健康状况和第五大死因。家庭护理人员处于管理 ADRD 的最前沿 贯穿整个护理过程，但通常不会被纳入有关预后的讨论中，而且往往效果不佳 准备参与替代决策。与没有 ADRD 的老年人相比，患有 ADRD 的老年人 不太可能完成预先指示并正式指定代理决策者，并且 遭受不必要的痛苦和繁重的临终关怀的风险更高。预先护理计划寻求 改善有关个人价值观、目标和护理偏好的沟通，但通常针对 具体决定，通常是在住院医院或疗养院。很少有针对预先护理的干预措施 初级保健规划，这是大多数 ADRD 患者最初被诊断和接受医疗的地方 管理。我们提出了一项多成分沟通干预的发展研究，称为 分享，积极吸引家庭护理人员并支持初级保健中的预先护理计划。 干预措施包括： 1.) 来自初级保健实践的一封信，介绍了一种新的高级护理 规划举措，2.) 个人-家庭议程设置，以协调患者和家庭对角色的看法 家庭成员参与初级护理互动并激发对预先护理计划的兴趣，3.) 持续 4.) 协助接受过培训以领导预先护理计划对话的护士或社会工作者 注册患者门户（针对患者和家属）以启用和扩展电子交互 向家庭照顾者提供信息。研究目标反映了与阶段 1A（细化）一致的两个阶段 NIH 行为干预开发阶段模型的 1B 阶段（测试）。首先，我们使用一个用户 - 以初级保健利益相关者（医生、执业护士、 社会工作者、工作人员）、ADRD 患者及其家庭护理人员。我们将迭代调整和预测试 该方案在 1 个初级保健诊所的 10-15 名患者-护理人员二人组中进行。目标 1 将产生可测试的干预措施 协议。其次，我们将与 4 个初级保健机构合作进行两组随机 1B 阶段 试验中 124 人接受常规护理对照方案，124 人接受干预 协议。我们假设干预（相对于对照）家庭照顾者会报告更好的护理质量 6 个月时的沟通（主要结果）以及死亡患者之间的干预（与对照） 患者将获得更高质量的临终关怀，而失去亲人的家庭护理人员也将做好更充分的准备 用于替代决策并报告较少的焦虑和抑郁症状（次要结果）。 我们将定性评估实施背景，以确定可能影响传播的因素 干涉。目标 2 将提供关键信息和证据，以促进后续传播。