Improving Sickle Cell Care in Adolescents & Adults in Chicago (ISAAC)

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 Improving Sickle cell care of Adolescents & Adults in Chicago (ISAAC) research team is developing interventions that will improve health outcomes for adolescents and adults with SCD using a multi-level, multi-modal approach that addresses barriers to evidence-based care in the Chicago area.

The ISAAC team is one of eight hospital-based clinical research teams participating in the national Sickle Cell Disease Implementation Consortium (SCDIC). The team is led by Victor Gordeuk (contact principal investigator) along with four other principal investigators (Lewis Hsu, Jerry Krishnan, Abraham Wandersman, and Jana Hirschtick) and ten co-investigators, representing both the University of Illinois at Chicago and Sinai Health Systems. This multidisciplinary team includes primary care and emergency department (ED) clinicians, hematologists, an implementation research scientist, an expert in health systems coordination and population health, a biostatistician, a school health specialist, and an epidemiologist with expertise in CHW interventions.

The three-pronged aim of the ISAAC study is:

1. To help patients with SCD access longitudinal care consistently;
2. To increase the number of patients taking hydroxyurea and the number of providers who prescribe this treatment; and
3. To provide proper management of pain in the emergency department.

Implementation science seeks to transform and improve health so as to move evidence-based practices into the real world more quickly and with greater success. Can a bundle of system improvements developed through implementation science effectively address each of these aims?

The first phase of the ISAAC study involves a systematic assessment of the barriers to care with the aim of identifying areas for improvement in the local health systems. The findings will be used in designing a multi-modal intervention for improving care built around three themes: Care Redesign; Improving Emergency Department Care; and Reducing the Number of Unaffiliated Patients. The intervention will be implemented and tested for efficacy in the second phase of the study.

In parallel, ISAAC and the seven other centers around the country who comprise the Sickle Cell Disease Implementation Consortium (SCDIC) will be enrolling over 2400 patients in a Sickle Cell Disease Patient Registry with the aim of generating a comprehensive picture of sickle cell care across the country. Locally, the ISAAC Patient registry will collect information on patient medical history, management of care, access to care, and quality of life to be shared with researchers interested in improving care for individuals with SCD.