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

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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.