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

改善青少年镰状细胞护理

• 批准号: 10197197
• 负责人: Victor R Gordeuk
• 金额: $ 58.86万
• 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 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10197197
• 关键词: Accident and Emergency department; Accountability; Acute pain management; Address; Adherence; Adolescent; Adult; Age; Ambulatory Care; Area; Beds; Caring; 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 Status; Health system; Healthcare; Healthcare Systems; Home visitation; Hospitals; Ice; Illinois; Inherited; Institutes; Institution; Intervention; Life; Medical; Medicine; Midwestern United States; Modeling; National Heart, Lung, and Blood Institute; Organ; Outcome; Pain; Pain management; Participant; Patient advocacy; Patients; Pediatric Hematologist; Phase; Physicians; Population; Practice Management; 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 framework; implementation research; implementation science; implementation tool; improved; improved outcome; innovation; multi-component intervention; multimodality; population health; programs; school health; smartphone Application; 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镰状细胞护理 (ISAAC)：项目摘要 许多患有镰状细胞病 (SCD) 的芝加哥青少年和成人：(1) 缺乏纵向定期行走 护理，(2) 不经常使用羟基脲，(3) 疼痛控制不足。该项目的总体目标是 通过系统地开发、测试和改善患有 SCD 的青少年和成人的预后 实施多层次、多方式干预。实施科学将指导每项活动 Getting To Outcomes (GTO) 应用程序，2 一个广泛使用的问责制实施框架。3 ISAAC 合作机构和目标人群：伊利诺伊大学医院与健康科学 系统（UI Health）包括一家拥有 495 个床位的医院以及美国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) 包括拥有 319 个床位的西奈山医院、拥有 160 个床位的圣十字医院 医院和西奈城市健康研究所 (SUHI)。 SUHI 是社区健康的区域资源 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岁之间居住在芝加哥地区的人，大约65%的这个年龄段的SCD患者居住在芝加哥。 临床现场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、实施研究科学家、卫生系统协调和人口专家 健康和具有社区卫生工作者 (CHW) 协调专业知识的流行病学家。共同研究者 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 基础参与研究专家和学校健康专家。咨询小组包括健康 系统主管和 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 （伊利诺伊州PH）。许多参与者已经是 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羟基脲；急诊科和医院的循证急性疼痛管理 病房（“痛苦护照”））。该计划的实施将通过技术来促进——一个提供 患者和提供者可以访问患者电子病历 (EMR) 中的 ISAAC 护理计划 - 以及 由社区卫生工作者在社区卫生工作者主导的家访期间进行，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，识别障碍和 ISAAC 护理计划的促进者。 2. 根据需求和情况完善并最终确定 ISAAC 护理计划 资源评估。 3. 将至少 300 名 15-44 岁的患者登记到镰状细胞登记处。 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 已登记在镰状细胞登记处。 5. 在有或没有社区卫生工作者干预的情况下评估护理计划。