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

  • Emily Riehm MeierEmail author
  • Isaac A. Janson
  • Kisha Hampton
  • Ellen Bloom
  • Natalie Duncan
  • Chris Roberson
  • Angeli Rampersad
Original Paper


Newborn screening (NBS) follow-up programs for infants with sickle cell disease (SCD) are highly variable among states. Initiated in 2009, Sickle SAFE, the NBS follow-up program for infants with SCD in Indiana, follows infants through home visits and phone contact. The current study assessed the attainment rates for recently published quality indicators of pediatric SCD care for Sickle SAFE participants. Using retrospective data, we determined the proportion of children who received transcranial Doppler (TCD) screening, influenza, and pneumococcal vaccination and were prescribed hydroxyurea. We calculated the mean age at confirmatory testing, time to receipt of penicillin prophylaxis, and mean age when genetic counseling was offered. One hundred ninety-eight children born with SCD in Indiana between July 1, 2009 and June 30, 2017 were followed for at least 1 year. While 97.5% received at least one dose of conjugated pneumococcal vaccine, vaccination with the 23 valent pneumococcal vaccine varied by location (county) of care (Allen: 14.3%, Lake: 26.7%, St. Joseph: 40.0%, Marion: 73.3%). Overall TCD screening rate for eligible children was 53%; TCD screening rate varied widely by location of care (Lake: 25% vs. Marion: 63.8%). Similarly, hydroxyurea prescribing practices varied significantly by location of care (p < 0.001). Identified gaps in adherence to quality indicators in SCD care will serve as the basis for future quality improvement initiatives.


Sickle cell disease Newborn screening Penicillin prophylaxis Hydroxyurea Transcranial Doppler 



The Sickle SAFE program is funded by the Indiana State Department of Health, Maternal Child Health Division’s Genomics and Newborn Screening Program.

Compliance with Ethical Standards

Conflict of interest

Dr. Meier is a consultant for CVS Caremark and receives grant funding from the Indiana State Department of Health. The other authors have no conflicts to disclose.


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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Departments of Pediatric HematologyIndiana Hemophilia and Thrombosis CenterIndianapolisUSA
  2. 2.Community ProgramsIndiana Hemophilia and Thrombosis CenterIndianapolisUSA

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