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Identifying relapses and stem cell transplants in pediatric acute lymphoblastic leukemia using administrative data:
Viviane C Cahen1, Yimei Li1,2,3, Kelly D Getz1,2,4
1Center for Childhood Cancer Research, Division of Oncology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Insights
Accurate methods were developed to identify relapse and hematopoietic stem cell transplantation (HSCT) in children with acute lymphoblastic leukemia (ALL) using administrative data. These validated methods show high accuracy for tracking outcomes in pediatric ALL patients.
Area of Science:
- Pediatric Oncology
- Health Informatics
- Epidemiology
Background:
- Identifying relapse and hematopoietic stem cell transplantation (HSCT) is crucial for managing childhood acute lymphoblastic leukemia (ALL).
- Existing methods for tracking these events in administrative data have limitations.
- Accurate identification of relapse and HSCT is essential for epidemiological studies and clinical trial enrollment.
Purpose of the Study:
- To design and validate methods for identifying relapse and HSCT in children with ALL using administrative hospitalization data.
- To assess the accuracy of these methods by comparing them to gold standards established through chart review.
- To estimate the incidence of relapse and HSCT in a large cohort of pediatric ALL patients.
Main Methods:
- Developed daily billing and ICD-9 code definitions to identify relapses and HSCTs within the Pediatric Health Information System (PHIS) database.
- Conducted chart reviews at two major children's hospitals (CHOP and TCH) to establish gold standards for sensitivity and positive predictive value (PPV) calculations.
- Analyzed a cohort of 10,150 children newly diagnosed with ALL between 2004 and 2013.
Main Results:
- The developed methods achieved sensitivity and PPV greater than 90% for identifying both relapse and HSCT at both participating hospitals.
- The five-year relapse incidence in the PHIS ALL cohort was 10.3%, with 7.1% of children undergoing HSCT.
- Higher-risk demographic groups showed increased rates of relapse and HSCT, with observed differences by race, ethnicity, and insurance status.
Conclusions:
- Administrative data can accurately identify relapse and HSCT in pediatric ALL patients, regardless of on- or off-therapy status.
- This validated method offers a robust approach for estimating relapse and HSCT incidences in pediatric ALL populations.
- The approach has broad applicability for children with ALL, including those not participating in clinical trials.
Introduction:
Our objectives were to design and validate methods to identify relapse and hematopoietic stem cell transplantation (HSCT) in children with acute lymphoblastic leukemia (ALL) using administrative data representing hospitalizations at US pediatric institutions.
Methods:
We developed daily billing and ICD-9 code definitions to identify relapses and HSCTs within a cohort of children with newly diagnosed ALL between January 1, 2004, and December 31, 2013, previously assembled from the Pediatric Health Information System (PHIS) database. Chart review for children with ALL at the Children's Hospital of Philadelphia (CHOP) and Texas Children's Hospital (TCH) was performed to establish relapse and HSCT gold standards for sensitivity and positive predictive value (PPV) calculations. We estimated incidences of relapse and HSCT in the PHIS ALL cohort.
Results:
We identified 362 CHOP and 314 TCH ALL patients in PHIS and established true positives by chart review. Sensitivity and PPV for identifying both relapse and HSCT in PHIS were > 90% at both hospitals. Five-year relapse incidence in the 10 150-patient PHIS cohort was 10.3% (95% CI 9.8%-10.9%) with 7.1% (6.6%-7.6%) of children underwent HSCTs. Patients in higher-risk demographic groups had higher relapse and HSCT rates. Our analysis also identified differences in incidences of relapse and HSCT by race, ethnicity, and insurance status.
Conclusions:
Administrative data can be used to identify relapse and HSCT accurately in children with ALL whether they occur on- or off-therapy, in contrast with published approaches. This method has wide potential applicability for estimating these incidences in pediatric ALL, including patients not enrolled on clinical trials.
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