Improving Sickle cell care in Adolescents & Adults in Chicago (ISAAC)

改善芝加哥青少年和成年人的镰状细胞护理(艾萨克)：项目摘要 许多患有镰状细胞病(SCD)的芝加哥青少年和成年人：(1)缺乏纵向规则的活动能力 护理，(2)不常使用羟基脲，(3)疼痛控制不足。这个项目的总体目标是 为改善青少年和成人SCD患者的预后，系统地开发、测试和 实施多层次、多模式干预。实施科学将指导每项活动通过 取得成果(GTO)应用程序，2一个广泛使用的问责执行框架。3 艾萨克合作机构和目标人群：伊利诺伊大学医院和健康科学 系统(UI Health)包括一家拥有495张床位的医院和#年最大的儿科和成人转诊镰刀细胞中心 中西部。西奈医疗系统(SHS)包括拥有319张床位的Mt.西奈医院，拥有160张床位的圣十字医院 医院和西奈城市卫生研究所(SuHI)。SuHI是社区卫生的地区性资源 工人(CHW)培训和实施。这些合作机构为542名独特的SCD患者提供服务 年龄15-44岁居住在芝加哥地区，大约65%的这个年龄段的SCD患者生活在芝加哥。 临床现场研究小组和顾问组：研究小组将由成人和儿科领导 血液学家，实施研究科学家，卫生系统协调和人口方面的专家 一名在社区卫生工作者(CHW)协调方面具有专业知识的流行病学家。共同调查员 包括初级保健和急诊科(ED)临床医生、生物统计学家、设计和社区 以参与性为基础的研究专家和一名学校卫生专家。顾问组包括健康 系统管理人员和FQHC、社区组织、提供者、患者、患者的代表 倡导组织、公立学校、城市交通中心和伊利诺伊州公共卫生部 (IDPH)。许多参与者已经是由HRSA、PCORI和IDPH资助的镰状细胞项目的合作者。 战略。我们将合作制定艾萨克护理计划(定期纵向护理；使用 患者和临床医生的羟基脲；急诊科和医院的循证急性疼痛管理 Ward(“疼痛护照”))。该计划的实施将由技术推动-一款应用程序，提供 患者和提供者可以在患者的电子病历(EMR)中访问艾萨克护理计划-以及 在CHW领导的家访期间，CHW使用艾萨克护理计划支持患者自我管理。 具体目标--第一阶段1.进行需求和资源评估，确定障碍和 艾萨克关怀计划的促进者。2.根据需求和需求细化并最终确定艾萨克护理计划 资源评估。3.在镰刀细胞登记处登记至少300名年龄在15-44岁之间的患者。 具体目标--第二阶段。4.在患者中实施目标2中制定的艾萨克护理计划 登记在镰刀细胞登记处。5.评估有无CHW干预的护理计划。

Improving Sickle cell care in Adolescents & Adults in Chicago (ISAAC): Project Summary Many Chicago adolescents and adults with sickle cell disease (SCD): (1) lack longitudinal regular ambulatory care, (2) infrequently use hydroxyurea and (3) have inadequate pain control. The overall goal of this project is to improve outcomes of adolescents and adults with SCD by systematically developing, testing, and implementing multi-level, multi-modal interventions. Implementation science will guide each activity through the Getting To Outcomes (GTO) application,2 a widely-used accountability implementation framework.3 ISAAC Collaborating Institutions and Targeted Population: The University of Illinois Hospital & Health Sciences System (UI Health) includes a 495-bed hospital and the largest pediatric and adult referral Sickle Cell Center in the Midwest. Sinai Health System (SHS) includes the 319-bed Mt. Sinai Hospital, the 160-bed Holy Cross Hospital and the Sinai Urban Health Institute (SUHI). SUHI is a regional resource for the Community Health Worker (CHW) training and implementation. These collaborating institutions serve 542 unique SCD patients age 15-44 years who live in the Chicago area, about 65% of all SCD patients of this age living in Chicago. Clinical Site Research Team and Advisory Group: The Research Team will be led by adult and pediatric hematologists, an implementation research scientist, an expert in health systems coordination and population health, and an epidemiologist with expertise in community health worker (CHW) coordination. Co-investigators include primary care and emergency department (ED) clinicians, a biostatistician, design and community based participatory research experts, and a school health specialist. The Advisory Group includes health system executives and representatives of FQHCs, community organizations, providers, patients, patient advocacy organizations, public schools, urban transportation center and Illinois Department of Public Health (IDPH). Many participants are already collaborators in sickle cell projects funded by HRSA, PCORI and IDPH. Strategy. We will collaborate in the development of the ISAAC Care Plan (regular longitudinal care; use of hydroxyurea by patients and clinicians; and evidence-based acute pain management in the ED and hospital ward (“pain passport”)). Implementation of the Plan will be facilitated by technology - an app that provides patients and providers access to the ISAAC Care Plan in the patient's electronic medical records (EMR)- and by CHWs during CHW-led home visits to support patient self-management using the ISAAC Care Plan. Specific Aims - Phase I. 1. Conduct a needs and resources assessment, identifying barriers and facilitators to the ISAAC Care Plan. 2. Refine and finalize the ISAAC Care Plan based on the needs and resources assessment. 3. Enroll at least 300 patients age 15-44 years into a Sickle Cell Registry. Specific Aims - Phase II. 4. Implement the ISAAC Care Plan developed in Aim 2 among patients enrolled in the Sickle Cell Registry. 5. Evaluate the Care Plan with and without a CHW intervention.