Estimating cancer treatment intensity from SEER cancer registry data: methods and implications for population-based regi
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ORIGINAL PAPER
Estimating cancer treatment intensity from SEER cancer registry data: methods and implications for population‑based registry studies of pediatric cancers Jessica L. Tobin1 · Stefanie M. Thomas2 · David R. Freyer3,4 · Ann S. Hamilton1 · Joel E. Milam1 Received: 1 September 2019 / Accepted: 24 July 2020 © Springer Nature Switzerland AG 2020
Abstract Objective The Intensity of Treatment Rating (ITR) Scale condenses treatment and clinical characteristics into a single measure to study treatment effects on downstream health outcomes across cancer types. This rating was originally developed for clinicians to determine from medical charts. However, large studies are often unable to access medical charts for all study participants. We developed and tested a method of estimating treatment intensity (TI) using cancer registry and patient self-reported data. Methods We estimated two versions of TI for a cohort of pediatric cancer survivors—one utilized information solely available from cancer registry variables (TIR) and the other included registry and self-reported information (TIS) from survey participants. In a subset of cases (n = 135) for whom the gold standard TI ( TIC) was known, both T IR and TIS were compared to TIC by calculating percent agreement and weighted Cohen’s kappa, overall and within cancer subtypes. Results In comparison to T IC, 71% of TI scores from both methods were in agreement (k = 0.61 TIR/0.54 TIS). Among subgroups, agreement ranged from lowest (46% TIR/39% TIS) for non-defined tumors (e.g., “Tumor-other”), to highest (94% TIR/94% TIS) for acute lymphoblastic leukemia (ALL). Conclusions We developed a methodology to estimate TI for pediatric cancer research when medical chart review is not possible. High reliability was observed for ALL, the most common pediatric cancer. Additional validation is needed among a larger sample of other cancer subgroups. The ability to estimate TI from cancer registry data would assist with monitoring effects of treatment during survivorship in registry-based epidemiological studies. Keywords Pediatric and adolescent cancer · Treatment intensity · Cancer registry · Epidemiology
Introduction Pediatric cancer treatments (e.g., surgery, radiation, chemotherapy), which vary in intensity and may affect different anatomic regions, commonly cause late effects, defined as * Jessica L. Tobin [email protected] 1
Department of Preventive Medicine, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA
2
Pediatric Hematology Oncology and Blood and Marrow Transplantation, Cleveland Clinic, Cleveland, USA
3
Children’s Hospital Los Angeles, Los Angeles, CA, USA
4
USC Norris Comprehensive Cancer Center, Los Angeles, CA, USA
adverse health outcomes attributed to cancer therapy that persist or emerge in the years following initial treatment. However, controlling for multiple single-treatment indicators may result in a loss of statistical power and/or may be insufficient to capture interactions between
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