Determining Adherence to Quality Indicators in Sickle Cell Anemia Using Multiple Data Sources

Abstract

Introduction Advances in primary prophylaxis have resulted in improved outcomes for patients with sickle cell anemia (SCA; i.e., hemoglobin SS- and Sβ°-thalassemia). Standard prophylactic measures include a first pneumococcal polysaccharide vaccine (PPV) and transcranial Doppler ultrasound (TCD) at age 2 years. Though efficacious, evidence suggests that delivery of these interventions is suboptimal. This study reports adherence to these measures and examines concordance across different data sources, using Registry and Surveillance for Hemoglobinopathies project data. Methods Retrospective database and SCA center chart review identified children with SCA aged 24–36 months between January 1, 2004, and December 31, 2008. PPV and TCD administration were determined through Medicaid and Children's Health Insurance Program administrative claims data, medical record review, and Georgia Registry of Immunization Transaction and Services. Analysis was conducted in 2015. Results A total of 125 children met inclusion criteria. Forty-five (36.0%) children had documentation of both interventions whereas 19 (15.2%) had no documentation of either intervention. Sixty-one (48.8%) children obtained only one intervention. Of these, more were likely to have had PPV than TCD (77.0% vs 23.0%, respectively, p<0.001). Agreement between claims data and medical record review was moderate for PPV (κ=0.55) and substantial for TCD (κ=0.74). Conclusions No single, reliable data source for tracking standard of care for children with SCA statewide was found. Based on study data, prophylaxis measures were not universally implemented during the surveillance period. Further research is needed to adequately track changes over time, determine risk groups, and develop methods of evaluating important metrics.

A patient‐centered medical home model for comprehensive sickle cell care in infants and young children

“…Uptake of pneumovax administration in our NCC was similar to previous reports. A study of children with SCD age 24‐36 months in Georgia found similar rates of pneumovax administration, 74% compared with our 70% 22 . Other statewide studies report lower rates of pneumovax administration: 43% in Wisconsin and 64% in Michigan 23,24 .…”

Sickle cell disease and implementation science: A partnership to accelerate advances

“…Implementing TCD screening, magnetic resonance imaging (MRI), and cognitive assessments should be standard care within pediatric SCD clinics. However, we know from peer‐reviewed publications and personal correspondence that we lack 100% penetrance of these standard practices . The path from the clinic to the school is cumbersome.…”

“…However, we know from peer-reviewed publications and personal correspondence that we lack 100% penetrance of these standard practices. 9,12 The path from the clinic to the school is cumbersome. At the clinic level, we can plan automated prompts with an electronic medical record for orders.…”

“…8 Population-based studies demonstrate that 25% of children with SCD in Georgia did not receive recommended pneumococcal vaccinations. 9 In a cohort of pediatric patients with SCD on Medicaid in New York, the rate of HU use increased from 25% to 40% over 4 years 10 ; while HU use did improve over the time of the study, the penetration of HU prescription varied by medical center, and prescription rates were suboptimal, even at the "best" centers. Data are similarly suboptimal among adults; fewer than 23% of adults with severe (three or more hospitalizations or emergency visits) sickle cell anemia (SCA) receive HU.…”

“…While the field has made major medical advances, including HU and transcranial Doppler (TCD) screening with prophylactic chronic transfusion for children with high risk for stroke, the median age of survival for individuals with SCD remains just 30–40 years, 30–45 years less than the average African American life expectancy . Population‐based studies demonstrate that 25% of children with SCD in Georgia did not receive recommended pneumococcal vaccinations . In a cohort of pediatric patients with SCD on Medicaid in New York, the rate of HU use increased from 25% to 40% over 4 years; while HU use did improve over the time of the study, the penetration of HU prescription varied by medical center, and prescription rates were suboptimal, even at the “best” centers.…”