Outcomes Among Surrogate decision makers In Stroke (OASIS)

 描述（由申请人提供）：每天在全国各地的医院，严重中风患者及其家属在入院的最初几个小时内都面临着关于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。这个代理人必须考虑病人的生命 目标和价值观，以确定他们所爱的人是否会选择持续的强化治疗，他们可能会生存，但有长期的残疾，或优先考虑舒适和接受早期死亡的可能性。在重症监护室中充当患者的替代决策者可能会产生长期的负面后果。然而，几乎没有什么是已知的替代决策者在不同的人群与中风。西班牙裔美国人现在是美国最大的少数民族群体，人口迅速增长和老龄化，墨西哥裔美国人是最大的亚群。墨西哥裔美国人和非西班牙裔白人之间在卒中发病率和结局方面存在多重差异，特别是在使用维持生命的治疗方面。少数群体可能特别容易因社会经济劣势、健康素养差以及缺乏提供者同情心和卫生系统改善沟通的战略而对临终问题缺乏充分沟通。然而，墨西哥裔美国人的文化包括强烈的家庭支持和宗教信仰的价值观，这可能会对有关维持生命的治疗和适应中风相关的残疾的讨论产生积极的影响。目前，在理解 中风替代决策者的观点和结果，使得不可能设计干预措施来帮助不同人群的患者和家庭度过这段令人难以置信的艰难时期。本提案的目的是：1）评估卒中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）评估作为卒中替代决策者的长期影响，并评估卒中替代者未满足的决策支持需求。研究结果将用于设计未来针对不同人群的中风患者和家庭成员的决策支持干预措施。该提案利用了Corpus Christi（BASIC）项目（R 01 NS 038916）的广泛基础设施，该项目是一项基于人群的流行病学中风监测研究，最近资助了第四个5年周期。新的前瞻性获得的数据替代决策者的结果，使用既定的验证措施将被链接到BASIC的丰富的纵向患者水平的数据功能的结果，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一个全面而具有成本效益的调查，否则将不可行的前瞻性纵向队列设计研究。

 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.