Outcomes Among Surrogate decision makers In Stroke (OASIS)

中风替代决策者的结果 (OASIS)

• 批准号: 9028490
• 负责人: LEWIS B MORGENSTERN
• 金额: $ 43万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2020-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9028490
• 关键词: Accounting; Acute; Admission activity; Adult; Adverse effects; Aging; Anxiety; Caring; Cause of Death; Cessation of life; Cognitive; Cognitive deficits; Communication; Communities; Country; Data; Decision Making; Development; Emotional; Empathy; Epidemiology; Ethnic Origin; Family; Family member; Funding; Future; Goals; Health system; Hispanic Americans; Hospitals; Hour; Incidence; Individual; Intensive Care Units; Intervention; Interview; Investigation; Lead; Life; Link; Measures; Medical; Mexican Americans; Minority; Minority Groups; Not Hispanic or Latino; Outcome; Palliative Care; Patients; Personal Satisfaction; Physicians; Population; Population Heterogeneity; Provider; Regrets; Religion and Spirituality; Reporting; Research Infrastructure; Resources; Resuscitation; Stroke; Subgroup; Time; attributable mortality; cohort; contextual factors; cost effective; depressive symptoms; design; disability; end of life; experience; functional outcomes; health literacy; improved; insight; loved ones; nervous system disorder; outcome forecast; population based; post-traumatic stress; prospective; psychologic; public health relevance; quality of death; shared decision making; socioeconomic disadvantage; surrogate decision maker; surveillance study; therapy design

 DESCRIPTION (provided by applicant): Every day in hospitals across the country, patients with severe stroke and their families are faced with decisions about life-sustaining treatments in the initial hours of admission. These decisions about resuscitation status, invasive treatments, or possible transitions to comfort care are typically made by a surrogate decision- maker due to communication or cognitive deficits in the patient. This surrogate must consider the patient's life goals and values to determine if their loved one would choose on-going intensive treatments where they may survive and yet have long term disabilities, or prioritize comfort and accept the likelihood of an earlier death. Serving as a surrogate decision maker for a patient in the intensive care unit can have long lasting negative consequences. However, almost nothing is known about surrogate decision makers in diverse populations with stroke. Hispanic Americans are now the largest minority group in the US, rapidly growing and aging, with Mexican Americans comprising the largest subgroup. Multiple disparities have been identified in stroke incidence and outcome between Mexican Americans and non-Hispanic Whites, particularly in the use of life- sustaining treatments. Minority populations may be particularly vulnerable to inadequate communication about end-of-life issues due to socioeconomic disadvantage, poor health literacy, and lack of provider empathy and health system strategies to improve communication. However, Mexican American culture includes strong values of family support and religiosity that may have a positive influence on discussions about life-sustaining treatment and adapting to stroke-related disabilities. There is currently a critical gap in understanding the perspectives and outcomes of stroke surrogate decision makers, making it impossible to design interventions to help diverse populations of patients and families through this incredibly trying time. The aims of this proposal are 1) To assess physician quality of communication, shared decision-making, and quality of end-of-life care among stroke surrogate decision makers; and 2) To assess the long-term impact of serving as a surrogate decision maker for stroke and assess the unmet decision support needs of stroke surrogates. Results will be used to design future targeted decision support interventions for diverse populations of stroke patients and family members. This proposal takes advantage of the extensive established infrastructure of the Brain Attack Surveillance in Corpus Christi (BASIC) project (R01 NS038916), a population based epidemiological stroke surveillance study recently funded for its fourth 5-year cycle. New prospectively obtained data on surrogate decision-maker outcomes using established validated measures will be linked to BASIC's rich longitudinal patient-level data on functional outcome to maximize efficiency. Leveraging the resources of this highly successful project will allow a comprehensive yet cost-effective investigation that would not otherwise be feasible to study in a prospective longitudinal cohort design.

 描述（由申请人提供）：每天，在全国各地的医院中，严重中风患者及其家人在入院的最初几个小时内都面临着有关维持生命治疗的决定。由于患者的沟通或认知缺陷，这些关于复苏状态、侵入性治疗或可能过渡到舒适护理的决定通常由代理决策者做出。这位代理人必须考虑患者的生命 目标和价值观，以确定他们的亲人是否会选择持续的强化治疗（这样他们可以生存但患有长期残疾），或者优先考虑舒适并接受提前死亡的可能性。担任重症监护病房患者的代理决策者可能会产生长期持续的负面后果。然而，对于不同中风人群的替代决策者几乎一无所知。西班牙裔美国人现在是美国最大的少数族裔，并且正在迅速增长和老龄化，其中墨西哥裔美国人是最大的亚群体。墨西哥裔美国人和非西班牙裔白人之间的中风发病率和结果存在多重差异，特别是在维持生命治疗的使用方面。由于社会经济劣势、健康素养差以及缺乏提供者同理心和卫生系统改善沟通的战略，少数群体可能特别容易受到有关临终问题沟通不充分的影响。然而，墨西哥裔美国人文化包含强烈的家庭支持和宗教价值观，这可能对有关维持生命治疗和适应中风相关残疾的讨论产生积极影响。目前在理解方面存在严重差距 中风替代决策者的观点和结果，使得无法设计干预措施来帮助不同人群的患者和家庭度过这段极其艰难的时期。该提案的目的是 1) 评估中风替代决策者之间的医生沟通质量、共同决策和临终关怀质量； 2) 评估作为中风替代决策者的长期影响，并评估中风替代者未满足的决策支持需求。结果将用于为不同人群的中风患者和家庭成员设计未来有针对性的决策支持干预措施。该提案利用了科珀斯克里斯蒂脑部攻击监测 (BASIC) 项目 (R01 NS038916) 广泛建立的基础设施，该项目是一项基于人群的流行病学中风监测研究，最近资助了其第四个 5 年周期。使用既定的验证措施前瞻性获得的关于替代决策者结果的新数据将与 BASIC 丰富的功能结果纵向患者水平数据相关联，以最大限度地提高效率。利用这个非常成功的项目的资源将允许进行全面且具有成本效益的调查，否则在前瞻性纵向队列设计中进行研究是不可行的。