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

改善青少年镰状细胞护理

• 批准号: 9326337
• 负责人: Victor R Gordeuk
• 金额: $ 64.47万
• 依托单位: UNIVERSITY OF ILLINOIS AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-08-05 至 2022-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9326337
• 关键词: Accident and Emergency department; Accountability; Acute Pain; Address; Adherence; Adolescent; Adult; Age; Ambulatory Care; Area; Beds; Caring; Cellular Phone; Chicago; Childhood; Communities; Community Health; Community Health Aides; Community Healthcare; Computerized Medical Record; Development; Enrollment; Epidemiologist; Evaluation; Evidence based intervention; Funding; Geography; Goals; Guidelines; Health; Health Sciences; Health system; Healthcare; Healthcare Systems; Home visitation; Hospitals; Ice; Illinois; Inherited; Institutes; Institution; Intervention; Life; Medical; Medicine; Midwestern United States; Modality; Modeling; National Heart, Lung, and Blood Institute; Organ; Outcome; Pain; Pain management; Participant; Patient advocacy; Patients; Pediatric Hematologist; Phase; Physicians; Population; Primary Health Care; Principal Investigator; Provider; Public Health; Research; Research Personnel; Resources; Schools; Scientist; Self Management; Sickle Cell; Sickle Cell Anemia; Specialist; System; Target Populations; Technology; Testing; Time; Training; Transportation; United States Centers for Medicare and Medicaid Services; United States Health Resources and Services Administration; Universities; Urban Health; advocacy organizations; base; biomedical referral center; care delivery; cell registry; clinical research site; community based participatory research; community organizations; design; evidence base; evidence based guidelines; hospital bed; hydroxyurea; implementation research; implementation science; improved; improved outcome; innovation; multi-component intervention; population health; programs; school health; tool; ward

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.

改善芝加哥青少年和成人的镰状细胞病护理（ISAAC）：项目总结 许多芝加哥青少年和成人镰状细胞病（SCD）：（1）缺乏纵向定期走动 护理，（2）不经常使用羟基脲和（3）疼痛控制不足。该项目的总体目标是 通过系统地开发，测试和治疗， 实施多层次、多模式的干预。实施科学将通过 GTO应用程序，2一个广泛使用的问责制实施框架。 ISAAC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健康）包括一个495张病床的医院和最大的儿科和成人转诊镰状细胞中心， 中西部。西奈卫生系统（SHS）包括319个床位的Mt.西奈医院，160个床位的圣十字医院 医院和西奈城市卫生研究所（SUHI）。SUHI是社区卫生的区域资源 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 年龄在15-44岁的人居住在芝加哥地区，约65%的该年龄的所有SCD患者居住在芝加哥。 临床研究中心研究团队和咨询小组：研究团队将由成人和儿童领导 血液学家，执行研究科学家，卫生系统协调和人口专家 一名流行病学家，具有社区卫生工作者（CHW）协调方面的专门知识。合作研究 包括初级保健和急诊科（艾德）临床医生、生物统计学家、设计师和社区 参与性研究专家和学校健康专家。咨询小组包括卫生 系统管理人员和CNOHC代表、社区组织、提供者、患者、患者 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ISAAC护理计划（定期纵向护理;使用 患者和临床医生使用的羟基脲;以及艾德和医院中基于证据的急性疼痛管理 病房（“疼痛护照”））。该计划的实施将得到技术的促进-一个应用程序， 患者和医疗服务提供者可以访问患者电子病历（EMR）中的ISAAC护理计划-以及 在CHW领导的家访期间，由CHW进行，以支持患者使用ISAAC护理计划进行自我管理。 具体目标-第一阶段。1.进行需求和资源评估，查明障碍， ISAAC护理计划的协调员。2.根据需要完善并最终确定ISAAC护理计划， 资源评估。3.至少招募300名年龄在15-44岁之间的患者进入镰状细胞登记研究。 具体目标-第二阶段。4.在患者中实施目标2中制定的ISAAC护理计划 在镰状细胞登记处登记。5.评估有和没有CHW干预的护理计划。