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Estimating cancer treatment intensity from SEER cancer registry data: methods and implications for population-based registry studies of pediatric cancers

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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 TIR and TIS were compared to TIC by calculating percent agreement and weighted Cohen’s kappa, overall and within cancer subtypes.

Results

In comparison to TIC, 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.

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Funding

The collection of cancer incidence data used in this study was supported by the California Department of Public Health pursuant to California Health and Safety Code Section 103885; Centers for Disease Control and Prevention’s (CDC) National Program of Cancer Registries, under cooperative agreement 5NU58DP003862-04/DP003862; the National Cancer Institute's Surveillance, Epidemiology, and End Results Program under contract HHSN261201000035C awarded to the University of Southern California, and contract HHSN261201000034C awarded to the Public Health Institute. This work was supported by the Whittier Foundation and Grant 1R01MD007801 from the National Institute on Minority Health and Health Disparities of the National Institutes of Health. Additional support was provided by P30CA014089 and T32CA009492 from the National Cancer Institute of the National Institutes of Health.

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Authors and Affiliations

  1. Department of Preventive Medicine, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA

    Jessica L. Tobin, Ann S. Hamilton & Joel E. Milam

  2. Pediatric Hematology Oncology and Blood and Marrow Transplantation, Cleveland Clinic, Cleveland, USA

    Stefanie M. Thomas

  3. Children’s Hospital Los Angeles, Los Angeles, CA, USA

    David R. Freyer

  4. USC Norris Comprehensive Cancer Center, Los Angeles, CA, USA

    David R. Freyer

Authors
  1. Jessica L. Tobin
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  2. Stefanie M. Thomas
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  3. David R. Freyer
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  4. Ann S. Hamilton
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  5. Joel E. Milam
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Corresponding author

Correspondence to Jessica L. Tobin.

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The authors have no conflicts of interest to disclose.

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Appendices

Appendix 1

figure a

Appendix 2

See Table 3.

Table 3 Prioritizations for overlapping TI classification terms
Full size table

Appendix 3

See Table 4.

Table 4 Stage at diagnosis variables available in the Los Angeles SEER cancer registry, by year of diagnosis
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Tobin, J.L., Thomas, S.M., Freyer, D.R. et al. Estimating cancer treatment intensity from SEER cancer registry data: methods and implications for population-based registry studies of pediatric cancers. Cancer Causes Control 31, 881–890 (2020). https://doi.org/10.1007/s10552-020-01328-7

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  • DOI: https://doi.org/10.1007/s10552-020-01328-7

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