Determining adherence to quality indicators in sickle cell anemia using multiple data sources

Cindy E Neunert, Robert W Gibson, Peter A. Lane, Pragya Verma-Bhatnagar, Vaughn Barry, Mei Zhou, Angela Snyder

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

Introduction Advances in primary prophylaxis have resulted in improved outcomes for patients with sickle cell anemia (SCA; i.e., hemoglobin SS- and Sβ0-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. 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. 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.

Original languageEnglish (US)
Pages (from-to)S24-S30
JournalAmerican Journal of Preventive Medicine
Volume51
Issue number1
DOIs
StatePublished - Jul 1 2016

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Information Storage and Retrieval
Sickle Cell Anemia
Doppler Ultrasonography
Pneumococcal Vaccines
Documentation
Medical Records
Registries
Sickle Hemoglobin
Hemoglobinopathies
Thalassemia
Medicaid
Standard of Care
Immunization
Databases
Research

ASJC Scopus subject areas

  • Epidemiology
  • Public Health, Environmental and Occupational Health

Cite this

Determining adherence to quality indicators in sickle cell anemia using multiple data sources. / Neunert, Cindy E; Gibson, Robert W; Lane, Peter A.; Verma-Bhatnagar, Pragya; Barry, Vaughn; Zhou, Mei; Snyder, Angela.

In: American Journal of Preventive Medicine, Vol. 51, No. 1, 01.07.2016, p. S24-S30.

Research output: Contribution to journalArticle

Neunert, Cindy E ; Gibson, Robert W ; Lane, Peter A. ; Verma-Bhatnagar, Pragya ; Barry, Vaughn ; Zhou, Mei ; Snyder, Angela. / Determining adherence to quality indicators in sickle cell anemia using multiple data sources. In: American Journal of Preventive Medicine. 2016 ; Vol. 51, No. 1. pp. S24-S30.
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abstract = "Introduction Advances in primary prophylaxis have resulted in improved outcomes for patients with sickle cell anemia (SCA; i.e., hemoglobin SS- and Sβ0-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. 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. 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.",
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N2 - Introduction Advances in primary prophylaxis have resulted in improved outcomes for patients with sickle cell anemia (SCA; i.e., hemoglobin SS- and Sβ0-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. 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. 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.

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