Elissa Z Faro1,2, Lisa Shook3,4,5, Marsha J Treadwell6, Allison A King7, Lauren N Whiteman8, E Donnell Ivy9, Mary Hulihan10, Patricia L Kavanagh11,12, Sabrina Selk13, Suzette Oyeku1,2, Scott D Berns14,15,16. 1. Albert Einstein College of Medicine, Bronx, NY, USA. 2. 37292 Children's Hospital at Montefiore, Bronx, NY, USA. 3. 2518 Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. 4. University of Cincinnati College of Medicine, Cincinnati, OH, USA. 5. Cincinnati Comprehensive Sickle Cell Center, Cincinnati, OH, USA. 6. 6164 Department of Hematology/Oncology, UCSF Benioff Children's Hospital Oakland, Oakland, CA, USA. 7. 12275 Washington University School of Medicine, St Louis, MO, USA. 8. 116031 Washington/Baltimore High Intensity Drug Trafficking Areas Program, George Mason University, Fairfax, VA, USA. 9. 374349 Hemoglobinopathies Programs, Genetic Services Branch, Division of Services for Children With Special Health Needs, Maternal and Child Health Bureau, Health Resources and Services Administration, Washington, DC, USA. 10. 1242 Epidemiology and Surveillance Branch, Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA. 11. 12259 Department of Pediatrics, Boston University School of Medicine, Boston, MA, USA. 12. Pediatric Emergency Department, Boston Medical Center, Boston, MA, USA. 13. 1854 Office of Health Equity, Massachusetts Department of Public Health, Boston, MA, USA. 14. 50980 National Institute for Children's Health Quality, Boston, MA, USA. 15. Warren Alpert Medical School of Brown University, Providence, RI, USA. 16. Brown University School of Public Health, Providence, RI, USA.
Abstract
OBJECTIVES: Coordinated measurement strategies are needed to inform collaborative approaches to improve access to and quality of care for persons with sickle cell disease (SCD). The objective of our study was to develop a multilevel measurement strategy to assess improvements in access to and quality of care for persons with SCD in 4 US regions. METHODS: From 2014 through 2017, regional grantees in the Sickle Cell Disease Treatment Demonstration Program collected administrative and patient-level electronic health record (EHR) data to assess quality improvement initiatives. Four grantees-covering 29 US states and territories and an SCD population of 56 720-used a collective impact model to organize their work. The grantees collected administrative data from state Medicaid and Medicaid managed care organizations (MCOs) at multiple points during 2014-2017 to assess improvements at the population level, and local patient-level data were abstracted from site-level EHRs at regular intervals to track improvements over time. RESULTS: Administrative data were an important source of understanding population-level improvements but were delayed, whereas patient-level data were more sensitive to small-scale quality improvements. CONCLUSIONS: We established a shared measurement approach in partnership with Medicaid and Medicaid MCO stakeholders that can be leveraged to effectively support quality improvement initiatives for persons with SCD in the United States.
OBJECTIVES: Coordinated measurement strategies are needed to inform collaborative approaches to improve access to and quality of care for persons with sickle cell disease (SCD). The objective of our study was to develop a multilevel measurement strategy to assess improvements in access to and quality of care for persons with SCD in 4 US regions. METHODS: From 2014 through 2017, regional grantees in the Sickle Cell Disease Treatment Demonstration Program collected administrative and patient-level electronic health record (EHR) data to assess quality improvement initiatives. Four grantees-covering 29 US states and territories and an SCD population of 56 720-used a collective impact model to organize their work. The grantees collected administrative data from state Medicaid and Medicaid managed care organizations (MCOs) at multiple points during 2014-2017 to assess improvements at the population level, and local patient-level data were abstracted from site-level EHRs at regular intervals to track improvements over time. RESULTS: Administrative data were an important source of understanding population-level improvements but were delayed, whereas patient-level data were more sensitive to small-scale quality improvements. CONCLUSIONS: We established a shared measurement approach in partnership with Medicaid and Medicaid MCO stakeholders that can be leveraged to effectively support quality improvement initiatives for persons with SCD in the United States.
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