Establishment of an 11-Year Cohort of 8733 Pediatric Patients Hospitalized at United States Free-standing Children’s Hospitals With De Novo Acute Lymphoblastic Leukemia From Health Care Administrative Data
Bibliographic Data
BACKGROUND: Acute lymphoblastic leukemia (ALL) accounts for almost one quarter of pediatric cancer in the United States. Despite cooperative group therapeutic trials, there remains a paucity of large cohort data on which to conduct epidemiology and comparative effectiveness research studies. RESEARCH DESIGN: We designed a 3-step process utilizing International Classification of Diseases-9 Clinical Modification (ICD-9) discharge diagnoses codes and chemotherapy exposure data contained in the Pediatric Health Information System administrative database to establish a cohort of children with de novo ALL. This process was validated by chart review at 1 of the pediatric centers. RESULTS: An ALL cohort of 8733 patients was identified with a sensitivity of 88% [95% confidence interval (CI), 83%-92%] and a positive predictive value of 93% (95% CI, 89%-96%). The 30-day all cause inpatient case fatality rate using this 3-step process was 0.80% (95% CI, 0.63%-1.01%), which was significantly different than the case fatality rate of 1.40% (95% CI, 1.23%-1.60%) when ICD-9 codes alone were used. CONCLUSIONS: This is the first report of assembly and validation of a cohort of de novo ALL patients from a database representative of free-standing children's hospitals across the United States. Our data demonstrate that the use of ICD-9 codes alone to establish cohorts will lead to substantial patient misclassification and result in biased outcome estimates. Systematic methods beyond the use of just ICD-9 codes must be used before analysis to establish accurate cohorts of patients with malignancy. A similar approach should be followed when establishing future cohorts from administrative data
Acute care · Cohort · Cohort study · Family medicine · Health care · Intensive care medicine · Leukemia · Lymphoblastic Leukemia · MEDLINE · Political science · Acute Lymphoblastic Leukemia research · Childhood Cancer Survivors' Quality of Life · Emergency Medicine · Internal Medicine · Medical Coding and Health Information · Medicine · Pediatrics
| Unique citing works | 1 |
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| Citations per year | 0,13 |
| Citation span | 2018 - 2018 (1) |
| Citation velocity | historical |
| Highly cited | No |
| Citation types | Neutral: 1 |