Respect, Trust, and Patient Outcomes in Sickle Cell Disease

描述（由申请人提供）：镰状细胞病（SCD）是美国最常见的遗传性疾病之一。血管闭塞导致急性、衰弱性疼痛，是SCD的标志，也是婴儿期以后住院治疗的最常见原因。在某种程度上，由于SCD患者在痛苦的危机期间需要麻醉药物，而提供者不愿开这些药物，患者通常被视为吸毒成瘾者，与卫生专业人员之间缺乏信任和尊重的敌对关系。敌对关系可能会被放大，这可能是因为SCD患者通常是种族/少数民族；信任和尊重在少数民族医患互动中较少出现。我们需要更好地了解SCD患者和他们的医生之间的互动中存在的复杂的行为和态度力量，以及它们对患者预后的影响。我们的目的是1)评估常规护理环境中SCD患者的尊重、信任、沟通、治疗依从性、护理适当性和健康结果的体验，以及2)评估急诊科和住院环境中患有疼痛危机的SCD患者的尊重、疼痛管理质量和健康结果的急性护理体验。我们将对350名SCD患者进行前瞻性队列研究。如果患者年龄在16岁或以上，患有镰状血红蛋白病并愿意给予知情同意，则符合条件。我们将测量尊重、信任、临床特征、疼痛相关的态度和行为、社会和行为特征、患者与提供者的沟通、患者的依从性、护理的适当性和患者的结果。我们还将更深入地研究急诊科或住院的患有疼痛危机的SCD患者（以及哮喘患者对照组）的经历，同时测量患者所经历的尊重，他们的护理质量（包括SCD的疼痛管理），疼痛解决和医疗保健利用。通过建立患者对尊重、信任、医疗过程和患者预后之间的基本关系，我们希望产生关于干预目标的重要信息，以降低发病率并改善弱势SCD患者的健康状况。在更广泛的范围内，这项研究可能会深入了解行为因素如何与病理生理学和医学进步相结合，影响影响少数民族和种族的其他慢性疾病的健康。镰状细胞病是美国最常见的遗传性疾病之一，主要影响非裔美国人，其特征是不可预测的衰弱性疼痛发作和预期寿命缩短。由于镰状细胞病患者报告了不尊重治疗和低质量的医疗保健，我们的研究旨在系统地评估SCD患者的尊重经历，他们对医疗保健提供者和卫生系统的信任，他们接受的医疗保健质量，以及他们在常规和急性护理环境中的整体健康结果。

DESCRIPTION (provided by applicant): Sickle cell disease (SCD) is one of the most common inherited diseases in the United States. Vasocclusion, resulting in acute, debilitating pain, is the hallmark of SCD and the most common reason for hospitalization beyond infancy. In part due to SCD patients' need for narcotic medications during painful crises, and providers' reluctance to prescribe them, patients are often viewed as drug addicts and have adversarial relationships lacking in trust and respect with health professionals. Adversarial relationships may be magnified perhaps because SCD patients are typically racial/ethnic minorities; trust and respect have been shown to occur less in minority patient-physician interactions. A better understanding is needed of the complex behavioral and attitudinal forces present in interactions between SCD patients and their providers and their effect on patient outcomes. Our aims are 1) to evaluate the experiences of respect, trust, communication, adherence to therapy, appropriateness of care, and health outcomes for SCD patients in routine care environments, and 2) to evaluate the acute care experiences of respect, pain management quality, and health outcomes for SCD patients with painful crisis in the Emergency Department and inpatient setting. We will conduct a prospective cohort study of 350 SCD patients. Patients will be eligible if they are age 16 or older, have a sickle hemoglobinopathy and are willing to give informed consent. We will measure experience of respect, trust, clinical characteristics, pain related attitudes and behaviors, social and behavioral characteristics, patient- provider communication, patient adherence, appropriateness of care and patient outcomes. We will also study more intensively the experience of SCD patients with painful crises (and a control group of asthma patients) who visit the Emergency Department or are hospitalized, also measuring respect experienced by patients, quality of their care (including pain management for SCD), pain resolution and health care utilization. By establishing the fundamental relations between patient experience of respect, trust, healthcare processes, and patient outcomes we hope to generate important information regarding targets for interventions to reduce morbidity and improve the health status of vulnerable SCD patients. On a wider scale, the research may provide insight into how behavioral factors, in conjunction with pathophysiology and medical advances, impact health for other chronic diseases affecting ethnic and racial minorities. Sickle cell disease--characterized by unpredictable episodes of debilitating pain and shortened life expectancy--is one of the most common inherited diseases in the United States and primarily affects African Americans. Because patients with sickle cell disease have reported treatment with disrespect and poor quality healthcare, our study aims systematically to assess SCD patients' experiences of respect, their trust in healthcare providers and the health system, the quality of healthcare they receive, and their overall health outcomes in both routine and acute care settings.