The Trajectory of Pediatric Cancer Data and Collection in the United States.

The past several years have been marked by substantial growth in pediatric cancer data and collection across the world. In the United States, multiple projects and standard setters have laid a foundation for the growth of this data, and the need for an overview and explanation of a few of the programs directly relevant to cancer registrars has become apparent. This article will discuss 3 initiatives that highlight many of the efforts and intricacies involved with the collection of pediatric cancer data in the cancer registry world: the National Childhood Cancer Registry, the Toronto Pediatric Cancer Stage Guidelines, and the Pediatric Site-Specific Data Items Work Group.

Trends in hepatocellular carcinoma stage by racial/ethnic group in the United States, 1992-2019.

Background & Aims: Although incidence rates of hepatocellular carcinoma (HCC) began to decline in the United States in the past decade, disparities in rates among racial/ethnic groups have persisted. Whether disparities in stage at diagnosis have remained over time, however, is unclear. Methods: National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) program has created a new staging-over-time variable that facilitates the examination of trends in HCC stage. Thus, the proportions of HCCs diagnosed by stage between 1992 and 2019 were examined among non-Hispanic White, non-Hispanic Black (NHB), Hispanic, Asian/Pacific Islander, and American Indian/Alaska Native (AI/AN) individuals. HCC incidence between 1992 and 2019 was also analysed using Joinpoint regression. Results: Between 1992 and 2019, the proportion of stage 1 HCCs increased and the proportion of stage 4 HCCs decreased among non-Hispanic White, NHB, Hispanic, and Asian/Pacific Islander individuals. Among AI/AN persons, the proportion of stage 1 tumours remained stable, and the proportion of stage 4 tumours declined. In the most recent time period, NHB individuals had the lowest proportions of stage 1 HCCs (32%) and the highest proportion of stage 4 HCCs (20%) of any group. Joinpoint analysis found that HCC incidence began to decline by 2013 among all groups except AI/AN individuals, the only group that had an increase in incidence. Conclusions: Despite generally favourable trends in HCC stage and incidence rates, disparities remain. NHB persons continue to have less favourable stages at diagnosis, and incidence rates continue to increase among AI/AN persons. Impact and implications: HCC incidence rates among most United States racial/ethnic groups began to decline in recent years, but whether stage at diagnosis also improved was unclear. As a result, a new SEER stage variable was used to examine stage trends by race/ethnicity. Although the finding of generally favourable trends in stage as well as incidence is encouraging, continuity disparities in both stage and incidence require serious attention.

Long-term Cancer Survival Trends by Updated Summary Stage.

BACKGROUND: Stage is the most important prognostic factor for understanding cancer survival trends. Summary stage (SS) classifies cancer based on the extent of spread: In situ, Localized, Regional, or Distant. Continual updating of staging systems poses challenges to stage comparisons over time. We use a consistent summary stage classification and present survival trends for 25 cancer sites using the joinpoint survival (JPSurv) model. METHODS: We developed a modified summary stage variable, Long-Term Site-Specific Summary Stage, based on as consistent a definition as possible and applied it to a maximum number of diagnosis years, 1975-2019. We estimated trends by stage by applying JPSurv to relative survival data for 25 cancer sites in SEER-8, 1975-2018, followed through December 31, 2019. To help interpret survival trends, we report incidence and mortality trends using the joinpoint model. RESULTS: Five-year relative survival improved for nearly all sites and stages. Large improvements were observed for localized pancreatic cancer [4.25 percentage points annually, 2007-2012 (95% confidence interval, 3.40-5.10)], distant skin melanoma [2.15 percentage points annually, 2008-2018 (1.73-2.57)], and localized esophagus cancer [1.18 percentage points annually, 1975-2018 (1.11-1.26)]. CONCLUSIONS: This is the first analysis of survival trends by summary stage for multiple cancer sites. The largest survival increases were seen for cancers with a traditionally poor prognosis and no organized screening, which likely reflects clinical management advances. IMPACT: Our study will be particularly useful for understanding the population-level impact of new treatments and identifying emerging trends in health disparities research.

Molecular biomarker-defined brain tumors: Epidemiology, validity, and completeness in the United States.

BACKGROUND: Selected molecular biomarkers were incorporated into the US cancer registry reporting for patients with brain tumors beginning in 2018. We investigated the completeness and validity of these variables and described the epidemiology of molecularly defined brain tumor types. METHODS: Brain tumor patients with histopathologically confirmed diagnosis in 2018 were identified within the Central Brain Tumor Registry of the United States and NCI's Surveillance, Epidemiology, and End Results Incidence databases. The brain molecular markers (BMM) site-specific data item was assessed for coding completeness and validity. 1p/19q status, MGMT promoter methylation, WHO grade data items, and new ICD-O-3 codes were additionally evaluated. These data were used to profile the characteristics and age-adjusted incidence rates per 100 000 population of molecularly defined brain tumors with 95% confidence intervals (95% CI). RESULTS: BMM completeness across the applicable tumor types was 75%-92% and demonstrated favorable coding validity. IDH-wildtype glioblastomas' incidence rate was 1.74 (95% CI: 1.69-1.78), as compared to 0.14 for WHO grade 2 (95% CI: 0.12-0.15), 0.15 for grade 3 (95% CI: 0.14-0.16), and 0.07 for grade 4 (95% CI: 0.06-0.08) IDH-mutant astrocytomas. Irrespective of WHO grade, IDH mutation prevalence was highest in adolescent and young adult patients, and IDH-mutant astrocytomas were more frequently MGMT promoter methylated. Among pediatric-type tumors, the incidence rate was 0.06 for H3K27M-mutant diffuse midline gliomas (95% CI: 0.05-0.07), 0.03 for SHH-activated/TP53-wildtype medulloblastomas (95% CI: 0.02-0.03), and <0.01 for both C19MC-altered embryonal tumor with multilayered rosettes and RELA-fusion ependymomas. CONCLUSIONS: Our findings illustrate the success of developing a dedicated, integrated diagnosis variable, which provides critical molecular information about brain tumors related to accurate diagnosis.

An updated histology recode for the analysis of primary malignant and nonmalignant brain and other central nervous system tumors in the Surveillance, Epidemiology, and End Results Program.

BACKGROUND: There are over 100 histologically distinct types of primary malignant and nonmalignant brain and other central nervous system (CNS) tumors. Our study presents recent trends in the incidence of these tumors using an updated histology recode that incorporates major diagnostic categories listed in the 2016 World Health Organization Classification of Tumours of the CNS. METHODS: We used data from the SEER-21 registries for patients of all ages diagnosed in 2000-2017. We calculated age-adjusted incidence rates and fitted a joinpoint regression to the observed data to estimate the Annual Percent Change and 95% confidence intervals over the period 2000-2017. RESULTS: There were 315,184 new malignant (34.2%; 107,890) and nonmalignant (65.8%; 207,294) brain tumor cases during 2004-2017. Nonmalignant meningioma represented 46.5% (146,498) of all brain tumors (malignant and nonmalignant), while glioblastoma represented 50.8% (54,832) of all malignant tumors. Temporal trends were stable or declining except for nonmalignant meningioma (0.7% per year during 2004-2017). Several subtypes presented decreases in trends in the most recent period (2013-2017): diffuse/anaplastic astrocytoma (-1.3% per year, oligodendroglioma (-2.6%), pilocytic astrocytoma (-3.8%), and malignant meningioma (-5.9%). CONCLUSIONS: Declining trends observed in our study may be attributable to recent changes in diagnostic classification and the coding practices stemming from those changes. The recode used in this study enables histology reporting to reflect the changes. It also provides a first step toward the reporting of malignant and nonmalignant brain and other CNS tumors in the Surveillance, Epidemiology, and End Results (SEER) Program by clinically relevant histology groupings.

Cancer collection efforts in the United States provide clinically relevant data on all primary brain and other CNS tumors.

Cancer surveillance is critical for monitoring the burden of cancer and the progress in cancer control. The accuracy of these data is important for decision makers and others who determine resource allocation for cancer prevention and research. In the United States, cancer registration is conducted according to uniform data standards, which are updated and maintained by the North American Association of Central Cancer Registries. Underlying cancer registration efforts is a firm commitment to ensure that data are accurate, complete, and reflective of current clinical practices. Cancer registries ultimately depend on medical records that are generated for individual patients by clinicians to record newly diagnosed cases. For the cancer registration of brain and other CNS tumors, the Central Brain Tumor Registry of the United States is the self-appointed guardian of these data. In 2017, the Central Brain Tumor Registry of the United States took the initiative to promote the inclusion of molecular markers found in the 2016 WHO Classification of Tumours of the Central Nervous System into information collected by cancer registries. The complexities of executing this latest objective are presented according to the cancer registry standard-setting organizations whose collection practices for CNS tumors are directly affected.

Overview of breast cancer collaborative stage data items--their definitions, quality, usage, and clinical implications: a review of SEER data for 2004-2010.

BACKGROUND: Surveillance, Epidemiology, and End Results (SEER) Program registries began collecting new data items, known as site-specific factors (SSFs), related to breast cancer treatment, prediction, and prognosis under the Collaborative Stage version 2 (CSv2) Data Collection System for cases diagnosed in 2010. The objectives of this report are to: 1) assess the completeness of the new SSFs and discuss their limitations and 2) discuss key changes in American Joint Committee on Cancer (AJCC) staging between the 6th and 7th editions. METHODS: We used data from the 18 SEER population-based registries (SEER-18), which included 71,983 women diagnosed with breast cancer in 2010. RESULTS: Of the 18 SSFs examined in this study, 6 SSFs were more than 75% complete. Information on estrogen receptor (ER), progesterone receptor (PR), and human epidermal growth factor receptor 2 (HER2), was available for more than 90% of the invasive breast cancer cases. These data are required to categorize the distinct subtypes of breast cancer. The majority of cases also had information on other prognostic factors such as Bloom-Richardson score/grade (83%) and the size of invasive component in the tumor (76%). As a result of changes in staging criteria, nearly 10% of cases categorized as stage IIA according to the 6th edition of the AJCC staging manual were downstaged to stage IB under the 7th edition. CONCLUSIONS: The Collaborative Stage data collection system enables registries to collect current, relevant, and standardized data items that are consistent with the evolving view of breast cancer as a heterogeneous disease.

Clinical and prognostic factors for melanoma of the skin using SEER registries: collaborative stage data collection system, version 1 and version 2.

BACKGROUND: The objectives of this article are to assess the completeness of the data collected on site-specific factors (SSFs) as a part of Collaborative Stage (CS) version 2 and the impact of the transition from the American Joint Committee on Cancer's (AJCC) 6th to 7th edition guidelines on stage distribution. METHODS: Incidence data for melanomas of the skin from 18 Surveillance, Epidemiology, and End Results (SEER) registries (SEER-18) were analyzed. Percentages of unknown cases for 7 SSFs were examined, along with staging trends from 2004 to 2010 and differences in AJCC 6th and 7th edition stage distributions for 2010 cases. RESULTS: Fewer than 10% of cases were coded as unknown for SSFs 1 (measured thickness), 2 (ulceration), and 3 (lymph node metastasis). For the remaining SSFs, 36-81% of cases were coded as unknown. Stage distributions were relatively consistent across time and between the AJCC 6th and 7th editions, with the exception of stage IA and stage INOS (not otherwise specified), for which a shift in cases was observed between the AJCC 6th and 7th edition guidelines fOR 2010 cases. CONCLUSIONS: A shift of cases out of stage IA and into stage INOS was observed between the AJCC 6th and 7th edition guidelines for 2010 cases. This was attributed to the high number of cases coded as unknown for SSF7 (primary tumor mitotic count/rate). The percentage of cases coded as unknown varied by SSF. Data completeness presents an issue for SSFs introduced in CS version 2.

Improved estimates of cancer-specific survival rates from population-based data.

BACKGROUND: Accurate estimates of cancer survival are important for assessing optimal patient care and prognosis. Evaluation of these estimates via relative survival (a ratio of observed and expected survival rates) requires a population life table that is matched to the cancer population by age, sex, race and/or ethnicity, socioeconomic status, and ideally risk factors for the cancer under examination. Because life tables for all subgroups in a study may be unavailable, we investigated whether cause-specific survival could be used as an alternative for relative survival. METHODS: We used data from the Surveillance, Epidemiology, and End Results Program for 2,330,905 cancer patients from January 1, 1992, through December 31, 2004. We defined cancer-specific deaths according to the following variables: cause of death, only one tumor or the first of multiple tumors, site of the original cancer diagnosis, and comorbidities. Estimates of relative survival and cause-specific survival that were derived by use of an actuarial method were compared. RESULTS: Among breast cancer patients who were white, black, or of Asian or Pacific Islander descent and who were older than 65 years, estimates of 5-year relative survival (107.5%, 106.6%, and 103.0%, respectively) were higher than estimates of 5-year cause-specific survival (98.6%, 95% confidence interval [CI] = 98.4% to 98.8%; 97.4%, 95% CI = 96.2% to 98.2%; and 99.2%, 95% CI = 98.4%, 99.6%, respectively). Relative survival methods likely underestimated rates for cancers of the oral cavity and pharynx (eg, for white cancer patients aged ≥65 years, relative survival = 54.2%, 95% CI = 53.1% to 55.3%, and cause-specific survival = 60.1%, 95% CI = 59.1% to 60.9%) and the lung and bronchus (eg, for black cancer patients aged ≥65 years, relative survival = 10.5%, 95% CI = 9.9% to 11.2%, and cause-specific survival = 11.9%, 95% CI = 11.2 % to 12.6%), largely because of mismatches between the population with these diseases and the population used to derive the life table. Socioeconomic differences between groups with low and high status in relative survival estimates appeared to be inflated (eg, corpus and uterus socioeconomic status gradient was 13.3% by relative survival methods and 8.8% by cause-specific survival methods). CONCLUSION: Although accuracy of the cause of death on a death certificate can be problematic for cause-specific survival estimates, cause-specific survival methods may be an alternative to relative survival methods when suitable life tables are not available.