Determining Adherence to Quality Indicators in Sickle Cell Anemia Using Multiple Data Sources.
Advances in primary prophylaxis have resulted in improved outcomes for patients with sickle cell anemia (SCA; i.e., hemoglobin SS- and Sβ(0)-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 various data sources, using Registry and Surveillance for Hemoglobinopathies project data.



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.



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).



No single, reliable data source for tracking standard of care for children with SCA statewide was found. According to 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.
Department of Pediatrics, Columbia University Medical Center and Morgan Stanley Children's Hospital, New York, New York.
Cindy E
CE
Neunert
Department of Emergency Medicine, Georgia Regents University, Augusta, Georgia.
Robert W
RW
Gibson
Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia; Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia.
Peter A
PA
Lane
Department of Pediatrics and Preventive Medicine, Quality of Life Health Services, Inc., Gadsden, Alabama.
Pragya
P
Verma-Bhatnagar
Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia; Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia.
Vaughn
V
Barry
Georgia Health Policy Center, Andrew Young School of Policy Studies, Georgia State University, Atlanta, Georgia.
Mei
M
Zhou
Georgia Health Policy Center, Andrew Young School of Policy Studies, Georgia State University, Atlanta, Georgia; Department of Public Management and Policy, Andrew Young School of Policy Studies, Georgia State University, Atlanta, Georgia. Electronic address: angiesnyder@gsu.edu.
Angela
A
Snyder
D000755:Anemia, Sickle Cell; D002675:Child, Preschool; D005260:Female; D005845:Georgia; D019983:Guideline Adherence; D006801:Humans; D007114:Immunization; D016247:Information Storage and Retrieval; D007345:Insurance Claim Review; D008297:Male; D011322:Primary Prevention; D019984:Quality Indicators, Health Care; D012042:Registries; D012189:Retrospective Studies; D017585:Ultrasonography, Doppler, Transcranial / Q000379:methods; D014481:United States