SC-Links - Linking the Sickle Cell Community, Providers and Systems to Improve Sickle Cell Disease Care

项目摘要 该提案建立了一个正式的合作联盟，SC链接，解决NHLBI的战略计划 目标是促进更好地了解将研究成果转化为青年实践的过程 在美国，患有镰状细胞病（SCD）的成年人面临着长期和普遍的疾病。 与了解SCD的门诊提供者获得预防性护理的不公平， 在急诊室（艾德）寻求重症治疗时，获得一致、高质量的护理 痛苦该联盟汇集了SCD临床和卫生服务研究人员的专业知识， 实施科学家和一系列利益攸关方，在针对个人的多层次干预措施中， 提供者、保健系统和社区，具体目标是：1a）建立一个共同框架 在该地区的SCD护理问题，考虑战略，以适应基于证据的干预措施， 满足独特的患者和提供者需求，并提出可行的医疗保健基础设施改进方案， 可以帮助15 - 45岁的青年和成人SCD的预防保健; 1b）参与较大的 混合方法中的SCD利益相关者社区需要评估，以确定促进者和障碍， 预防性和急性SCD护理以及有效的患者自我管理;并在SCD登记中招募患者; 2)建立一个基于人口的SCD登记处，并在五个县招募至少300名青年和成年人 面积（代表护理中的重要变化）。加州。该队列将在以下时间段入组干预措施： SC-Links第二阶段;和3）实施和评估SC-Links干预组件的影响 包括：改善SCD和初级保健提供环境中的操作，以确保患者得到 根据NHLBI指南进行健康维护和羟基脲监测;引入证据- 基于健康指导，以吸引通过登记研究确定的需要初级或SCD的患者 门诊护理;在参与的ED中实施标准订单集，以提高及时评估和 治疗急性SCD相关疼痛。这些干预措施的目标人群是605名青年和成人， 在该地区的SCD。该研究使用了以前未应用于SCD研究的循证模型， 知情地了解形成干预措施组成部分和评估人口健康的障碍/促进因素 措施，如有效地达到广泛的临床网站和代表性的 注册表示例。该项目利用新建立的全州纵向SCD监测系统， 纳入了跨研究协调的测量。该研究使用了最高水平的 随机化可行，包括引入标准顺序的新型阶梯楔形群集研究设计 设置SCD疼痛在ED。通过使用建立和创新的方法，理论，测量和 研究设计，该项目推进科学知识的最佳方法，以促进临床实践 改变以缩小证据基础与适当治疗和预防性SCD护理之间的差距。

Project Summary This proposal establishes a formal collaborative consortium, SC-Links, that addresses NHLBI's strategic plan goal to foster improved understanding of the processes involved in translating research into practice for youth and adults with sickle cell disease (SCD) in the U.S. This population has faced long-standing and pervasive inequities in accessing preventive care with outpatient providers who are knowledgeable about SCD, and with accessing consistent, high quality care when seeking treatment in the emergency department (ED) for severe pain. The consortium brings together the expertise of SCD clinical and health services researchers, implementation scientists and a range of stakeholders, in multi-level interventions that target individuals, providers, healthcare systems and communities with the specific aims to: 1a) Establish a common framework of the problem of SCD care in the region, consider strategies to adapt evidence-based interventions for meeting unique patient and provider needs and propose feasible healthcare infrastructure enhancements that can help routinize preventive care for youth and adults ages 15 – 45 years with SCD; 1b) Engage the larger SCD stakeholder community in a mixed methods needs assessment to identify facilitators and barriers to preventive and acute SCD care and effective patient self-management; and enroll patients in the SCD registry; 2) Establish a population-based SCD Registry and recruit a minimum of 300 youth and adults in a five county area (representing important variations in care) in N. California. This cohort will be enrolled in interventions in Phase II of SC-Links; and 3) Implement and evaluate the impact of the SC-Links intervention components including: improving operations within SCD and primary care delivery settings to ensure that patients receive health maintenance and hydroxyurea monitoring according to the NHLBI guidelines; introducing evidence- based health coaching to engage patients, identified through the registry, as in need of primary or SCD outpatient care; and implementing a standard order set in participating EDs to improve timely assessment and treatment of acute SCD-related pain. The target population for these interventions is 605 youth and adults with SCD in the region. The research uses evidence-based models not previously applied to SCD research, to inform understanding of barriers/enablers to shape intervention components and to assess population health measures such as effectiveness at reaching a wide range of clinical sites and representativeness of the registry sample. The project draws on a newly established statewide longitudinal SCD surveillance system and incorporates measurement that is harmonized across studies. The research uses the highest level of randomization feasible, including the novel stepped-wedge cluster study design to introduce standard order sets for SCD pain in the ED. By using established and innovative approaches to theory, measurement and research design, the project advances scientific knowledge of the best methods to promote clinical practice changes to lessen the gap between the evidence base and appropriate treatment and preventive SCD care.