State-based surveillance for selected hemoglobinopathies

Hulihan, Mary M.; Feuchtbaum, Lisa; Jordan, Lanetta; Kirby, Russell S.; Snyder, Angela; Young, William G.; Greene, Yvonne; Telfair, Joseph; Wang, Ying; Cramer, William A.; Werner, Ellen M.; Kenney, Kristy; Creary, Melissa S.; Grant, Althea M.

doi:10.1038/gim.2014.81

Cited by 37 publications

(58 citation statements)

References 10 publications

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“…In our novel approach, we built a large SCD cohort from the socioeconomically diverse state of California, using an iterative process based on methods described in other SCD epidemiologic studies. [26][27][28][29][44][45][46] We then assessed the clinical burden of ONFH and hip postsurgical outcomes in the entire cohort, using regression techniques to identify potential predictors for ONFH diagnosis and need for hip arthroplasty.…”

Section: Discussionmentioning

confidence: 99%

Osteonecrosis of the femoral head in sickle cell disease: prevalence, comorbidities, and surgical outcomes in California

et al. 2017

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• In sickle cell disease, ONFH incidence accelerates in early adulthood.• Frequent hospitalizations and antecedent acute chest syndrome are independently associated with sickle cell-related ONFH.Osteonecrosis of the femoral head (ONFH) is a prevalent complication of sickle cell disease (SCD) that has not been well described in population-based cohort studies. ongoing studies into prevention and effective nonsurgical interventions for SCD-induced osteonecrosis must remain a high research priority.

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Section: Discussionmentioning

confidence: 99%

Osteonecrosis of the femoral head in sickle cell disease: prevalence, comorbidities, and surgical outcomes in California

et al. 2017

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“…A total of 4,288 children and adults were identified by Georgia RuSH between 2004 and 2008 24 with a confirmed diagnosis of SCD, of these, 2,837 had SS- or Sβ°-thalassemia. A total of 285 were aged 2–3 years, and 143 (50%) were enrolled in public insurance coverage for at least 9 of 12 months.…”

Section: Resultsmentioning

confidence: 99%

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

Neunert

Gibson

Lane

et al. 2016

American Journal of Preventive Medicine

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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.

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“…There are numerous case definitions developed to identify children with sickle cell disease using ICD‐9‐CM diagnosis codes that cannot be applied to claims data reporting ICD‐10‐CM diagnosis codes . These ICD‐9‐CM definitions vary from a simple count of sickle cell disease–related diagnosis codes to combinations of outpatient and inpatient visits . The majority of these ICD‐9‐CM definitions were developed to identify children with any form of sickle cell disease, as opposed to children with a specific diagnosis of SCA.…”

Section: Discussionmentioning

confidence: 99%

Performance of ICD‐10‐CM diagnosis codes for identifying children with Sickle Cell Anemia

Reeves

Madden

et al. 2020

Health Services Research

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Objective To develop, test, and validate the performance of ICD‐10‐CM claims‐based case definitions for identifying children with sickle cell anemia (SCA). Data Sources Medicaid administrative claims (2016) for children <18 years with potential SCA (any D57x diagnosis code) and newborn screening records from Michigan and New York State. Study Design This study is a secondary data analysis. Data Collection/Extraction Methods Using specific SCA‐related (D5700, D5701, and D5702) and nonspecific (D571) diagnosis codes, 23 SCA case definitions were applied to Michigan Medicaid claims (2016) to identify children with SCA. Measures of performance (sensitivity, specificity, area under the ROC curve) were calculated using newborn screening results as the gold standard. A parallel analysis was conducted using New York State Medicaid claims and newborn screening data. Principal Findings In Michigan Medicaid, 1597 children had ≥1 D57x claim; 280 (18 percent) were diagnosed with SCA. Measures of performance varied, with sensitivities from 0.02 to 0.97 and specificities from 0.88 to 1.0. The case definition of ≥1 outpatient visit with a SCA‐related or D571 code had the highest area under the ROC curve, with a sensitivity of 95 percent and specificity of 92 percent. The same definition also had the highest performance in New York Medicaid (n = 2454), with a sensitivity of 94 percent and specificity of 86 percent. Conclusions Children with SCA can be accurately identified in administrative claims using this straightforward case definition. This methodology can be used to monitor trends and use of health services after transition to ICD‐10‐CM.

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State-based surveillance for selected hemoglobinopathies

Cited by 37 publications

References 10 publications

Osteonecrosis of the femoral head in sickle cell disease: prevalence, comorbidities, and surgical outcomes in California

Osteonecrosis of the femoral head in sickle cell disease: prevalence, comorbidities, and surgical outcomes in California

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

Performance of ICD‐10‐CM diagnosis codes for identifying children with Sickle Cell Anemia

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