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Related Experiment Video

Updated: Mar 19, 2026

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
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Determining Adherence to Quality Indicators in Sickle Cell Anemia Using Multiple Data Sources.

Cindy E Neunert1, Robert W Gibson2, Peter A Lane3

  • 1Department of Pediatrics, Columbia University Medical Center and Morgan Stanley Children's Hospital, New York, New York.

American Journal of Preventive Medicine
|June 21, 2016
PubMed
Summary
This summary is machine-generated.

Prophylactic measures for sickle cell anemia (SCA) were not consistently given to children. Tracking these essential interventions, like pneumococcal vaccines and TCD, requires better data systems for improved patient outcomes.

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Area of Science:

  • Pediatrics
  • Hematology
  • Public Health

Background:

  • Advances in primary prophylaxis have improved outcomes for sickle cell anemia (SCA) patients.
  • Standard prophylaxis includes pneumococcal polysaccharide vaccine (PPV) and transcranial Doppler (TCD) screening at age 2.
  • Evidence suggests suboptimal delivery of these crucial interventions.

Purpose of the Study:

  • To report adherence to PPV and TCD in children with SCA.
  • To examine data source concordance for tracking these interventions.
  • To identify challenges in monitoring standard of care for SCA.

Main Methods:

  • Retrospective review of SCA center charts and databases.
  • Analysis of children aged 24-36 months with SCA (hemoglobin SS and Sβ(0)-thalassemia).
  • Data sources included administrative claims, medical records, and immunization registries.

Main Results:

  • Only 36.0% of 125 children had documentation of both PPV and TCD.
  • 15.2% had no documentation of either intervention.
  • Agreement between claims data and medical records was moderate for PPV (κ=0.55) and substantial for TCD (κ=0.74).

Conclusions:

  • Prophylaxis measures were not universally implemented during the study period.
  • No single data source reliably tracked standard of care for SCA children statewide.
  • Further research is needed to improve tracking and evaluation of SCA interventions.