Implementation of a Sickle Cell Enhanced Novel Care Network in South Carolina (iSCENSC)

摘要 镰状细胞病（SCD）在美国被认为是一个显着的健康差距，由于数量 受影响的患者，可用的提供者的缺乏，疾病的耻辱，以及缺乏治疗选择 受影响的人（4）在美国的某些地区，这些问题进一步恶化了很大比例 受影响的患者生活在农村地区，获得护理的机会有限，社会经济地位较低， 供资办法（5、6）。南卡罗来纳州（SC）是一个资源严重不足的州， 治疗SCD患者。儿科血液学家的州一级参与，管理式护理 组织、患者和社区基金会促成了南卡罗来纳州镰状细胞（SC 2）的形成 全州网络，旨在增加所有SCD患者获得循证护理的机会， 通过访问连接到区域专科的SCD医疗之家（辐条）改善其临床结果 中心（Hub）。这种方法利用国家的资源来改善对SCD患者的护理， 利用合作医院系统的优势，并使用基于技术的方法将护理扩展到农村 地区这个项目，iSCENSC（在南卡罗来纳州实施镰状细胞增强新型护理网络） 旨在评估实现SC2网络全面实施的干预有效性， 确定中心和辐条护理模式是否增加了SCD患者获得优质护理的机会， 产生的结果足以确定可复制的方法，特别是在农村地区， 人口。具体目标是：1。目前在三个目标区域进行系统的需求评估 参与SC2（中部、Pee Dee和低地），以评估当前和SCD最佳实践之间的差距 青少年和成人SCD患者，并确定与疾病特异性护理相关的护理提供问题 初级保健、急性护理管理和护理协调。2：让所有相关利益攸关方参与 （患者/护理人员、提供者、供应链2合作伙伴）开始进行能力建设， 有针对性的干预措施，以提高三个自然科学区域内的执行准备程度， 系统，并进一步为第二阶段实施战略提供信息。3：启动比较有效性研究 采用中断的时间序列、多部门、多模式设计，包括具体的执行干预措施 战略布局iSCENSC将是第一个在青少年中进行的多层次、多中心实施科学研究， 成人SCD旨在实现全州SCD网络的结果。我们提出了第一个大型研究， 阻碍采用和使用NHLBI SCD指南的障碍以及传播和 执行战略，以缩小现有的准则与实践之间的差距， SCD治疗、SCD护理提供的政策和资金支持。

ABSTRACT Sickle cell disease (SCD) is recognized as a significant health disparity in the United States due to the number of patients affected, the paucity of available providers, disease stigmatization, and a lack of treatment options for affected individuals (4). In certain regions of the US, these issues are further worsened by a large percentage of affected patients living in rural regions with limited access to care, lower socioeconomic status, and fewer funding options (5, 6). South Carolina (SC) is a prime example of state that is tremendously under-resourced to treat individuals living with SCD. State-level engagement of pediatric hematologists, managed care organizations, patients, and community foundations resulted in formation of the South Carolina-Sickle Cell (SC2) statewide network designed to increase access to evidence-based care for all individuals living with SCD and to improve their clinical outcomes through access to a SCD medical home (Spoke) connected to a regional specialty care center (Hub). This approach harnesses the state’s resources to improve care for individuals with SCD, utilize the strengths of partnering hospital systems, and use a technology based approach to extend care to rural areas. This project, iSCENSC (Implementation of a Sickle Cell Enhanced Novel Care Network in South Carolina) is designed to evaluate intervention effectiveness for achieving full implementation of the SC2 network and to determine if the hub and spokes model of care increases access to quality care for individuals with SCD and produces findings sufficient to identify replicable methods for optimal care enrichment especially in rural populations. Specific Aims are: 1. Perform a systematic needs assessment in three target regions currently involved in SC2 (Midlands, Pee Dee and Lowcountry) to assess the gap between current and SCD best practices for adolescent and adult SCD patients and to identify care delivery issues associated with disease-specific care primary care, acute care management, and care coordination. 2: Engage all relevant stakeholders (patients/caregivers, providers, SC2 partners) to begin building capacity for the conduct and assessment of targeted interventions to increase implementation readiness within three SC regions and partnering health systems and to further inform Phase II implementation strategies. 3: Initiate comparative effectiveness study using an interrupted time series, multi-sector, multi-modal design including specific implementation intervention strategies. iSCENSC will be the first multilevel, multicenter implementation science study in adolescents and adults with SCD aiming to achieve the outcome of a statewide SCD network. We propose the first large study of barriers inhibiting adoption and use of NHLBI SCD Guideline and of effectiveness of dissemination and implementation strategies in closing existing guideline-to-practice gaps and reducing longstanding disparities in SCD treatment, policy, and funding support of SCD care delivery.