Outcomes Among Surrogate decision makers In Stroke (OASIS)

 描述(申请人提供)：每天在全国各地的医院，重症中风患者及其家人在入院的最初几个小时都面临着是否进行维持生命治疗的决定。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是由代理决策者由于患者的沟通或认知缺陷而做出的。代孕妈妈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在他们可能存活但长期残疾的情况下进行持续的强化治疗，或者优先考虑舒适度并接受更早死亡的可能性。作为重症监护病房患者的代理决策者，可能会产生长期的负面后果。然而，对于不同中风人群中的代孕决策者几乎一无所知。拉美裔美国人现在是美国最大的少数群体，迅速增长和老龄化，墨西哥裔美国人构成了最大的亚群体。墨西哥裔美国人和非西班牙裔白人在中风发生率和预后方面存在多方面的差异，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受到有关临终问题的沟通不充分的影响，原因是社会经济状况不利，健康素养较差，以及缺乏改善沟通的提供者同理心和卫生系统战略。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价值观，这可能会对关于维持生命的治疗和适应中风相关残疾的讨论产生积极影响。目前在理解这一问题上存在严重差距 中风替代决策者的观点和结果，使得设计干预措施来帮助不同人群的患者和家庭度过这一令人难以置信的艰难时期变得不可能。这项建议的目的是：1)评估医生的沟通质量、共同决策和卒中代理决策者的临终关怀质量；2)评估作为卒中代理决策者的长期影响，并评估卒中代理决策者未得到满足的决策支持需求。结果将被用于为不同人群的中风患者及其家庭成员设计未来有针对性的决策支持干预措施。这项建议利用了科珀斯克里斯蒂脑发作监测(BASIC)项目(R01 NS038916)的广泛基础设施，该项目是最近为第四个5年周期资助的基于人群的流行病学中风监测研究。使用已建立的有效措施获得的关于替代决策者结果的新的预期数据将与Basic公司丰富的关于功能结果的纵向患者水平数据相联系，以最大限度地提高效率。利用这一非常成功的项目的资源，将能够进行全面但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。

 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.