Cancer Treatment Data in Central Cancer Registries: When Are Supplemental Data Needed?

Liang, Rifei; Jasem, Jagar; Lindrooth, Richard C.; Sabik, Lindsay M.; Perraillon, Marcelo Coca

doi:10.1177/11769351221112457

Cited by 10 publications

(8 citation statements)

References 12 publications

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“…For this study, in breast cancer, we found higher concordance between SACT and HES-APC than reported by a previous study in colon cancer [8]. Several studies carried out in the United States comparing records across registry and claims data also found the combination of sources to be of value in identifying treatment use, noting registry data were more likely to have incomplete capture for older patients [22][23][24][25].…”

Section: Discussionsupporting

confidence: 45%

Concordance of cancer drug therapy information derived from routinely collected hospital admissions data and the Systemic Anti-Cancer Therapy (SACT) dataset, for older women diagnosed with early invasive breast cancer in England

Gannon

Park

Miller

et al. 2023

Cancer Epidemiology

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Section: Discussionsupporting

confidence: 45%

Concordance of cancer drug therapy information derived from routinely collected hospital admissions data and the Systemic Anti-Cancer Therapy (SACT) dataset, for older women diagnosed with early invasive breast cancer in England

Gannon

Park

Miller

et al. 2023

Cancer Epidemiology

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“… 27 Thus, Medicaid managed care is not likely to affect completeness of claims in Colorado. 20 In addition, our sample selection criteria omitted women who did not receive surgery, biasing the sample toward a treated group. However, only a small and statistically insignificant difference in surgical treatment was observed.…”

Section: Discussionmentioning

confidence: 99%

“…Assessments of validity concluded that the linked data were of high quality 27 and APCD data on treatment and insurance status were reliable. 20 …”

Section: Methodsmentioning

confidence: 99%

“…Although disparities in treatment between those with Medicaid and private insurance can be due to patient, clinician, and insurance factors, another possibility is that cancer registries may have incomplete treatment data, disproportionately so for patients insured with Medicaid. 19 , 20 For example, population-based studies that used cancer registries in California and New York reported that women with Medicaid were less likely to receive recommended treatments, with the exception of chemotherapy. 18 Similar treatment disparities based on registries, including the Surveillance, Epidemiology, and End Results (SEER) registry, without claims data, are reported elsewhere.…”

Section: Introductionmentioning

confidence: 99%

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Treatment Disparities in Radiation and Hormone Therapy Among Women Covered by Medicaid vs Private Insurance in Cancer Registry and Claims Data

et al. 2023

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ImportancePrior research has reported undertreatment among patients with cancer who are insured by Medicaid, but this finding may be due, in part, to incomplete data in cancer registries.ObjectiveTo compare disparities in radiation and hormone therapy between women with breast cancer covered by Medicaid and those with private insurance using the Colorado Central Cancer Registry (CCCR) and CCCR data supplemented with All Payer Claims Data (APCD).Design, Setting, and ParticipantsThis observational cohort study included women aged 21 to 63 years who received breast cancer surgery. We linked the CCCR and Colorado APCD to identify Medicaid and privately insured women who were newly diagnosed with invasive, nonmetastatic breast cancer between January 1, 2012, and December 31, 2017. In the radiation treatment analysis, we narrowed the sample to women who received breast-conserving surgery (Medicaid, n = 1408; private, n = 1984) and in the hormone therapy analysis, we selected women who were hormone-receptor positive (Medicaid, n = 1156; private, n = 1667).Main Outcomes and MeasuresWe used logistic regression to estimate the likelihood of treatment within 12 months to assess whether the results varied between data sources.ResultsThere were 3392 and 2823 participants in the radiation and hormone therapy cohorts, respectively. The mean (SD) age was 51.71 (8.30) years in the radiation therapy cohort, and 52.00 (8.16) years in the hormone therapy cohort. Among the participants, there were 140 (4%) and 105 (4%) who were Black non-Hispanic, 499 (15%) and 406 (14%) who were Hispanic, 2602 (77%) and 2190 (78%) were White, and 151 (4%) and 122 (4%) were other/unknown in the radiation and hormone therapy cohorts, respectively. A higher percentage of women were aged 50 years or younger in the Medicaid samples (40% vs 34% in the privately insured sample) and identified as non-Hispanic Black (about 7%) or Hispanic (approximately 24%). Treatment was underreported in both sources, but to a lesser extent in the APCD (2.5% and 2.0% for Medicaid and private insurance, respectively) compared with CCCR (19.5% and 13.3% for Medicaid and private insurance, respectively). Using CCCR data, Women with Medicaid insurance were 4 (95% CI, −8 to −1; P = .02) and 10 (95% CI, −14 to −6; P &lt; .001) percentage points less likely to have a record of radiation and hormone therapy compared with privately insured women, respectively. Using combined CCCR and APCD, no statistically significant disparity was observed in radiation or hormone therapy between Medicaid-insured and privately insured women.Conclusions and RelevanceAmong women with breast cancer covered by Medicaid vs private insurance, cancer treatment disparities may be overestimated if based solely on cancer registry data.

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“…Patient data are nearly complete on variables, such as race and ethnicity, and offer granular classifications 16 . However, treatment data are incomplete in registries, especially beyond the first course of treatment, 16 and can systematically vary by region, cancer site, insurance payer, and reporting source 17 . Because registries are population-based, linkages between APCDs and registries allow for assessments of people missing in APCDs.…”

mentioning

confidence: 99%

Building Data Infrastructure for Disease-Focused Health Economics Research

Bradley,

Liang,

Lindrooth

et al. 2023

Medical Care

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Background: Data infrastructure for cancer research is centered on registries that are often augmented with payer or hospital discharge databases, but these linkages are limited. A recent alternative in some states is to augment registry data with All-Payer Claims Databases (APCDs). These linkages capture patient-centered economic outcomes, including those driven by insurance and influence health equity, and can serve as a prototype for health economics research. Objectives: To describe and assess the utility of a linkage between the Colorado APCD and Colorado Central Cancer Registry (CCCR) data for 2012–2017. Research Design, Participants, and Measures: This cohort study of 91,883 insured patients evaluated the Colorado APCD-CCCR linkage on its suitability to assess demographics, area-level data, insurance, and out-of-pocket expenses 3 and 6 months after cancer diagnosis. Results: The linkage had high validity, with over 90% of patients in the CCCR linked to the APCD, but gaps in APCD health plans limited available claims at diagnosis. We highlight the advantages of the CCCR-APCD, such as granular race and ethnicity classification, area-level data, the ability to capture supplemental plans, medical and pharmacy out-of-pocket expenses, and transitions in insurance plans. Conclusions: Linked data between registries and APCDs can be a cornerstone of a robust data infrastructure and spur innovations in health economics research on cost, quality, and outcomes. A larger infrastructure could comprise a network of state APCDs that maintain linkages for research and surveillance.

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Cancer Treatment Data in Central Cancer Registries: When Are Supplemental Data Needed?

Cited by 10 publications

References 12 publications

Concordance of cancer drug therapy information derived from routinely collected hospital admissions data and the Systemic Anti-Cancer Therapy (SACT) dataset, for older women diagnosed with early invasive breast cancer in England

Concordance of cancer drug therapy information derived from routinely collected hospital admissions data and the Systemic Anti-Cancer Therapy (SACT) dataset, for older women diagnosed with early invasive breast cancer in England

Treatment Disparities in Radiation and Hormone Therapy Among Women Covered by Medicaid vs Private Insurance in Cancer Registry and Claims Data

Building Data Infrastructure for Disease-Focused Health Economics Research

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