Using an Electronic Health Record-Based Registry to Improve Pediatric Sickle Cell Care

2014 Archives, April 2014, Vol. 21, No. 4, Archives, Reports from the Field

Patricia L. Kavanagh, MD, Amy E. Sobota, MD, MPH, Elizabeth S. McClure, BA, Philippa G. Sprinz, MD, MSc, and William G. Adams, MD

From the Department of Pediatrics, Boston University School of Medicine, Boston Medical Center, Boston, MA.

This article is the second in our Hemoglobinopathy Learning Collaborative series. See the related editorial by Oyeku et al in the February 2014 issue of JCOM. (—Ed.) 



Objective: To describe the development and use of an electronic health record (EHR)–based sickle cell disease (SCD) registry for children with SCD to enhance case management and quality improvement (QI) efforts at an urban, academic, safety net institution.

Methods: Using national guidelines and the literature, we created quality metrics for pediatric SCD that focused on vaccination delivery and use of transcranial Doppler screening and hydroxyurea. We revised EHR forms for SCD care and created an EHR-based SCD registry that permitted monthly and annual reporting on quality metrics.

Results: From 2008 to 2012, the percentage of children with SCD vaccinated for influenza increased from 52% to 65%, and for meningococcus from 53% to 70%. After licensure of PCV13 in 2010, the percentage of children vaccinated rose to 69% in 2012. Results for PPV23 were mixed: 87% to 91% received ≥1 dose, but the rate for receiving the second dose declined from 76% to 64%. Percentage of children screened annually with transcranial Doppler consistently ranged from 62% to 73% during the 5 years. QI initiatives in 2012–2013 led to increased influenza vaccination, from 65% to 83%, and increased hydroxyurea use, from 52% to 73%.

Conclusion: In this study, a practical, replicable and feasible approach for improving the quality of SCD care combined the collaboration of a multidisciplinary team, an EHR-based disease registry, and QI initiatives. Additional work is needed to define and measure all elements of high-quality care for children with SCD and link process measures to clinical outcomes.


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