Adherence to Quality of Care Indicators and Location of Sickle Cell Care Within Indiana

Area of Science:

• Pediatric Hematology
• Public Health Initiatives
• Genomic Medicine

Background:

• Newborn screening (NBS) for sickle cell disease (SCD) is crucial for early intervention.
• Follow-up programs for infants with SCD exhibit significant state-level variability.
• The Sickle SAFE program in Indiana, established in 2009, utilizes home visits and phone contact for NBS follow-up.

Purpose of the Study:

• To assess the achievement rates of pediatric SCD care quality indicators within the Sickle SAFE program.
• To identify variations in care delivery across different locations within Indiana.
• To inform future quality improvement initiatives for SCD management.

Main Methods:

• Retrospective data analysis of 198 children with SCD born in Indiana between July 1, 2009, and June 30, 2017.
• Evaluation of rates for transcranial Doppler (TCD) screening, influenza and pneumococcal vaccinations, and hydroxyurea prescription.
• Calculation of mean age at confirmatory testing, time to penicillin prophylaxis, and age for genetic counseling.

Main Results:

• High uptake of at least one dose of conjugated pneumococcal vaccine (97.5%).
• Significant variability in 23-valent pneumococcal vaccine administration by county (e.g., Marion: 73.3% vs. Allen: 14.3%).
• Suboptimal overall TCD screening rate (53%) with wide geographic disparities (Lake: 25% vs. Marion: 63.8%).
• Significant variations in hydroxyurea prescribing practices based on location of care (p < 0.001).

Conclusions:

• Adherence to key quality indicators for pediatric sickle cell disease care in Indiana's Sickle SAFE program is inconsistent.
• Geographic location significantly impacts the delivery of essential SCD care components, including TCD screening and vaccinations.
• Identified disparities underscore the need for targeted quality improvement strategies to ensure equitable and optimal care for all infants with SCD.