PROJECT SUMMARY (Parent)
The proposed project will provide critical information to inform the development and implementation of
interventions to improve the receipt of preventive services among children with sickle cell anemia. National
guidelines strongly recommend that children with sickle cell anemia receive routine screenings and be offered
preventive medications to reduce the risk of serious complications including infections, strokes, and pain
crises. Although these complications are associated with increased health services utilization and cost, and
reduced quality of life, only 40% of children receive routine screenings and less than 20% receive preventive
medications. Significantly, the mechanisms driving quality gaps in the receipt of preventive services are
unknown, limiting our ability to develop and implement impactful interventions. The overall objective of this
study is to shed light on these mechanisms and identify opportunities to optimize receipt of preventive services
among children with sickle cell anemia, thus reducing disease burden and improving quality of life. The
proposed study directly impacts the following AHRQ priority populations: children, racial and ethnic minorities,
low-income patients, and those with special healthcare needs. As such, it aligns with AHRQ’s mission to
improve efficiency and quality of health care delivery for vulnerable populations.
Using a mixed methods approach, we will (1) identify critical targets within the healthcare delivery
system, as well as key subgroups of the population, through which intervention can improve the receipt of
preventive services for children with sickle cell anemia; (2) identify barriers to and facilitators of receipt of
preventive services, and (3) integrate the quantitative findings of patterns of care and adherence deficiencies
with the qualitative findings of barriers and facilitators to preventive services to identify intervention targets and
strategies that are most likely to improve receipt of preventive services. The mixed methods approach includes
analyzing data from three large complementary, nationally representative datasets, combined with primary
qualitative data collection. The datasets provide a novel opportunity to provide a population-based perspective
on the care of children with sickle cell anemia, as well as national data on prescribing practices. Quantitative
methods, including machine learning and time-dependent survival analysis, will enable us to characterize
patterns of care associated with receipt of preventive services, as well variation in adherence across providers,
patients, caregivers, and insurance type. Qualitative, key informant interviews with provider teams, caregivers,
and patients will identify potential barriers to and facilitators of adherence to each preventive service, as well as
opportunities for intervention. Finally, the visual integration of the quantitative analysis with the qualitative
findings through a joint display will provide essential information regarding which intervention targets and
strategies are most likely to improve receipt of preventive services and ultimately reduce morbidity among
children with sickle cell anemia.
