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.)
Abstract
- 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.
Sickle cell disease (SCD) is the most commonly inherited disorder in the United States, affecting approximately 100,000 individuals and 1 in 400 African American births [1,2]. The use of preventive strategies, such as immunizations [3], transcranial Doppler screening and transfusion protocols [4,5], and hydroxyurea therapy [6,7] has contributed to decreased morbidity and mortality among children with SCD [8,9]. However, a substantial gap exists between the care that children with SCD should receive and the care they actually receive [10–12]. An essential component of any effort that seeks to improve care is the ability to measure care processes and outcomes in a way that can drive quality improvement (QI) initiatives. Registries serve a vital role in quality improvement activities for many pediatric conditions, including inflammatory bowel disease [13] and cystic fibrosis [14]. However, there are no national or nationally representative registries currently available for children with SCD [15]. There is a pressing need for better information systems and tools that can be used in mainstream clinical settings to measure clinical performance with respect to quality indicators [16] if the goals of high quality care and better quality of life are to be achieved for children with SCD.
Electronic health records (EHRs) have been successfully used to improve the quality of care and enhance performance measurement in select institutions [17,18], and adoption of EHRs is growing. The 2009 American Recovery and Reinvestment Act allocated $20.8 billion in incentives to assist providers to adopt and “meaningfully use” EHRs [19,20]. As of 2011, 39% of office-based providers have implemented at least a basic EHR [21], up from 17% in 2008 [22]. The effective use of EHRs depends on collaboration between technical and medical experts so that functionality is achieved and clinical quality is appropriately measured. In addition, few EHRs contain specialized content for the care of persons with SCD.