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

项目摘要 这项提议建立了一个正式的合作联盟SC-Links，以解决NHLBI的战略计划 目标是促进更好地了解将研究转化为青年实践所涉及的过程 和患有镰状细胞病(SCD)的成年人。这一人群面临着长期和普遍的 与有SCD知识的门诊提供者以及 在急诊科(ED)寻求重症患者治疗时获得一致的、高质量的护理 疼痛。该联盟汇集了SCD临床和卫生服务研究人员的专业知识， 在针对个人的多层次干预中，实施科学家和一系列利益攸关方， 提供者、医疗保健系统和社区的具体目标是：1)建立一个共同框架 对于该区域的SCD护理问题，考虑调整基于证据的干预措施的战略 满足患者和提供商的独特需求，并提出可行的医疗基础设施增强方案 有助于将15-45岁患有SCD的青少年和成年人的预防性护理常规化；1)让较大的 SCD利益相关者社区采用混合方法进行需求评估，以确定促进者和障碍 预防和急性SCD护理和有效的患者自我管理；并将患者登记在SCD登记处； 2)建立以人口为基础的SCD登记处，并在五个县招募至少300名青年和成年人 北加州地区(代表护理方面的重要变化)。这一队列将在#年纳入干预措施。 SC-Links第二阶段；以及3)实施和评估SC-Links干预组成部分的影响 包括：改进SCD和初级保健提供环境中的操作，以确保患者获得 根据NHLBI指南进行健康维护和羟基尿素监测；介绍证据- 以健康指导为基础，通过登记处确定需要初级或SCD的患者 门诊护理；以及在参与急救的急诊室实施标准顺序，以改善及时评估和 急性SCD相关疼痛的治疗。这些干预措施的目标人群是605名患有 SCD在该地区。这项研究使用了以前没有应用于SCD研究的循证模型，以 了解障碍/促进因素，以形成干预措施组成部分并评估人口健康 措施，如在广泛的临床地点的有效性和代表性 注册表示例。该项目利用了新建立的全州范围的纵向SCD监测系统，并 纳入了跨研究协调的测量。这项研究使用了最高水平的 随机化可行，包括新颖的阶梯楔形整群研究设计，引入标准顺序 在急诊室为SCD疼痛设置。通过使用既定的和创新的方法来进行理论、测量和 研究设计，该项目推进了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.