Reducing Morbidity in Sickle Cell Disease-Prevent Acute Chest Syndrome system (PACSystem) pilot study

ABSTRACT Background: Sickle cell disease (SCD) is chronic hemolytic anemia that causes irreversible organ damage resulting in a shortened lifespan. As a pediatric hematologist, my career goal is to utilize implementation science (IS) and health services research (HSR) methods to address the limitations of the health care system contributing to the poor outcomes of children and youth with SCD. My previous work, funded by an Agency for Healthcare Research and Quality (AHRQ) institutional K12 award, demonstrated that providers often have difficulty in adhering to standard of care practices for inpatient pediatric SCD management. Complications such as acute chest syndrome (ACS) could be reduced by an improved understanding of SCD providers’ attitudes and perceptions and by developing targeted approaches to influence their behavior. Research: In this K08 award proposal, there are three main aims: 1) to identify the barriers and enablers that healthcare providers face to provide standard of care to patients with SCD; 2) develop an electronic health record (EHR) clinical decision support system (CDSS), with employing a user-centered design approach and engaging healthcare providers; and 3) pilot the CDSS using an IS framework on an inpatient pediatric SCD unit. The COM-B (Capability, Opportunity, Motivation and Behavior) model will be used to guide design, data collection and analysis plans in Aim 1 and the RE-AIM (Reach, Effectiveness, Adoption, Implementation and Maintenance) framework will guide evaluation of the implementation outcomes in Aim 3. Training: I recently completed a Master of Science in Clinical Research Methods which provided excellent introductory-level training in epidemiology, statistics, and principles of stakeholder-engaged research. This K08 award will leverage my clinical expertise in SCD and provide training in qualitative methods, IS, bioinformatics, advanced statistical methods and design and analysis of hybrid effectiveness-implementation trials; these skills are essential to facilitate my transition to research independence. Environment: The Department Chair of Pediatrics enthusiastically supports my application and ensures that >75% of my time will be protected for research and education during the award. The Children’s Hospital at Montefiore, affiliated with the Albert Einstein College of Medicine, is located in the Bronx, NY and has one of the largest SCD cohorts in New York City. I have an excellent mentorship team of well-established researchers who have guided my career to date, supported the publication of multiple manuscripts and advised on the preparation of the K12 and K08 applications. Additional mentors for this proposal will add to the skills I need to become a successful independent researcher. Long-term goal: My goal is to become an independent National Institutes of Health-funded HSR investigator who can effectively conduct stakeholder-engaged research and implement health systems interventions to positively impact the health of SCD patients in the United States.