BACKGROUND: Treatment for lung cancer can improve prognosis, but 5-year survival remains low at 26%. An examination of treatment using data with higher population coverage, and among a broader number of treatment modalities and individual characteristics, would provide greater insight into differences in lung cancer treatment. RESEARCH QUESTION: Among adults diagnosed with lung cancer, how does reported receipt of lung cancer treatment differ by sociodemographic characteristics? STUDY DESIGN AND METHODS: We used 2015-2020 National Program of Cancer Registry data covering 89% of the US population to describe first-course treatment among people aged >= 20 years and diagnosed with lung and bronchus cancer. We performed multivariable logistic regression to examine associations between sociodemographic characteristics and treatment received. RESULTS: Among 1,068,155 people diagnosed with lung cancer, 22% received surgery, 41% received chemotherapy, 40% received radiation, 13% received immunotherapy, and 75% received at least one of the four treatments. People who were aged >= 45 years (OR range, 0.08-0.67); were of American Indian or Alaska Native (OR, 0.82; 95% CI, 0.77-0.87), Black (OR, 0.82; 95% CI, 0.81-0.84), or Hispanic (OR, 0.80; 95% CI, 0.78-0.82) race/ethnicity; resided in a nonmetropolitan county (OR, 0.98; 0.96-0.99); resided in the bottom 25% (OR, 0.80; 95% CI, 0.78-0.81) and middle 50% (OR, 0.87; 95% CI, 0.86-0.88) of counties by economic status (considers unemployment rate, per capita market income, and poverty rate); and in the West US census region (OR, 0.95; 95% CI, 0.94-0.97) had significantly lower odds of receiving at least 1 of the 4 treatments. INTERPRETATION: Chemotherapy and radiation were the most common types of first-course treatment reported. Receipt of at least one of the four treatments examined was lower among several groups, including certain racial and ethnic groups and those residing in counties with lower economic status. Future studies might further identify and intervene on factors underlying differences. CHEST 2025; 167(4):1218-1231
This study assessed resource allocation among registry activities, which may provide insight for efficient collection of high-quality cancer incidence data. We used a multimodal approach and purposively sampled 21 participating population-based cancer registries in the United States to ensure variation across several registries. The registries reported prospective staffing data and retrospective costing data, completing data collection from October 2021 to September 2022, reporting retrospective costing data for July 1, 2020, through June 30, 2021. From lessons learned from prior studies, we engaged participating registries early and throughout the study, ensuring the collection of meaningful, accurate quantitative data, as well as insights not captured quantitatively. Case volume is a major driver of registry costs. (On average, high-volume registries outspend low-volume registries by nearly 3x, annually). Upon examination of registry activities by case volume, we found that the two most resource-intensive registry activities are data acquisition and data processing, which may be addressed by innovations, such as electronic reporting and automation. Innovative data transfer and processing approaches could increase timeliness of data collection and reduce the labor resources required to process manually collected data. Registries adopting these innovations might achieve cost savings, which could make resources available to support other registry activities.
The Centers for Disease Control and Prevention (CDC) has emphasized a need for data modernization initiatives (DMIs) to improve the quality and timeliness of cancer surveillance data. To guide such DMI efforts, we need data on the resources required to generate high-quality data. Twenty-one central cancer registries (CCRs) collected data from July 2020 to June 2021. We explored the potential relationship between resources for (1) electronic reporting and automation and (2) the quality of CCR data. We then compared activity-based costs of registries that always (n = 8), sometimes (n = 6), or seldom/never (n = 7) met data quality standards for completeness, timeliness, duplicate rate, and missing values. We found the registries that consistently met data quality standards used more resources on setting up processes to acquire data, training staff, and processing data. Compared to high-quality registries, registries that seldom/never met quality standards spent the most on case finding/data abstraction of non-hospital records. This study provides key findings for resource use, which can guide advancements when implementing electronic reporting and automation to improve CCR operations.
The JRM would like to extend its gratitude to all the editors who guided the journal in its mission to be a voice for the cancer registry community over the decades.
BACKGROUND:Standardization of procedures for data abstraction by cancer registries is fundamental for cancer surveillance, clinical and policy decision-making, hospital benchmarking, and research efforts. The objective of the current study was to evaluate adherence to the four components (completeness, comparability, timeliness, and validity) defined by Bray and Parkin that determine registries' ability to carry out these activities to the hospital-based National Cancer Database (NCDB). METHODS:Tbis study used data from U.S. Cancer Statistics, the official federal cancer statistics and joint effort between the Centers for Disease Control and Prevention (CDC) and the National Cancer Institute (NCI), which includes data from National Program of Cancer Registries (NPCR) and Surveillance, Epidemiology, and End Results (SEER) to evaluate NCDB completeness between 2016 and 2020. The study evaluated comparability of case identification and coding procedures. It used Commission on Cancer (CoC) standards from 2022 to assess timeliness and validity. RESULTS:Completeness was demonstrated with a total of 6,828,507 cases identified within the NCDB, representing 73.7% of all cancer cases nationwide. Comparability was followed using standardized and international guidelines on coding and classification procedures. For timeliness, hospital compliance with timely data submission was 92.7%. Validity criteria for re-abstracting, recording, and reliability procedures across hospitals demonstrated 94.2% compliance. Additionally, data validity was shown by a 99.1% compliance with histologic verification standards, a 93.6% assessment of pathologic synoptic reporting, and a 99.1% internal consistency of staff credentials. CONCLUSION:The NCDB is characterized by a high level of case completeness and comparability with uniform standards for data collection, and by hospitals with high compliance, timely data submission, and high rates of compliance with validity standards for registry and data quality evaluation.
BACKGROUND Cancer is a leading cause of death by disease among children and adolescents in the United States. This study updates cancer incidence rates and trends using the most recent and comprehensive US cancer registry data available. METHODS We used data from US Cancer Statistics to evaluate counts, age-adjusted incidence rates, and trends among children and adolescents aged <20 years diagnosed with malignant tumors during 2003-2019. We calculated average annual percent change and annual percent change (APC) using joinpoint regression. Rates and trends were stratified by demographic and geographic characteristics and by cancer type. RESULTS With 248,749 cases reported during 2003-2019, the overall cancer incidence rate was 178.3 per 1 million; incidence rates were highest for leukemia (46.6), central nervous system (CNS) neoplasms (30.8), and lymphoma (27.3). Rates were highest for males, children aged 0-4 years, Non-Hispanic White children and adolescents, those in the Northeast census region, top 25% of counties by economic status, and metropolitan counties with population ≥1 million. While the overall incidence rate of pediatric cancer increased 0.5% per year on average during 2003-2019, the rate increased during 2003-2016 (APC = 1.1%) and then decreased during 2016-2019 (APC = -2.1%). During 2003-2019, rates of leukemia, lymphoma, hepatic tumors, bone tumors, and thyroid carcinomas increased, while melanoma rates decreased. CNS neoplasms rates increased until 2017 and then decreased. Other cancer types remained stable. CONCLUSIONS Incidence of pediatric cancer increased overall, although increases were limited to certain cancer types. These findings may guide future public health and research priorities.
Background Cancer survival has improved for the most common cancers. However, less improvement and lower survival has been observed in some groups perhaps due to differential access to cancer care including prevention, screening, diagnosis, and treatment. Methods To further understand contemporary relative cancer survival (one- and five- year), we used survival data from CDC’s National Program of Cancer Registries (NPCR) for cancers diagnosed during 2007–2016. We examined overall relative cancer survival by sex, race and ethnicity, age, and county-level metropolitan and non-metropolitan status. Relative cancer survival by metropolitan and non-metropolitan status was further examined by sex, race and ethnicity, age, and cancer type. Results Among persons with cancer diagnosed during 2007–2016 the overall one-year and five-year relative survival was 80.6% and 67.4%, respectively. One-year relative survival for persons living in metropolitan counties was 81.1% and 77.8% among persons living in non-metropolitan counties. We found that persons who lived in non-metropolitan counties had lower survival than those who lived in metropolitan counties, and this difference persisted across sex, race and ethnicity, age, and most cancer types. Conclusion Further examination of the differences in cancer survival by cancer type or other characteristics might be helpful for identifying potential interventions, such as programs that target screening and early detection or strategies to improve access to high quality cancer treatment and follow-up care, that could improve long-term outcomes. Impact This analysis provided a high-level overview of contemporary cancer survival in the United States.
As part of its data modernization initiative (DMI), the Centers for Disease Control and Prevention, Division of Cancer Prevention and Control is testing and implementing innovative solutions to improve cancer surveillance data quality and timeliness. We describe a consensus-based effort to create a framework to guide the evaluation of cancer surveillance modernization efforts by addressing specific context, processes, and costs related to cancer registration. We drew on prior theories, consulted with experts, and sought feedback from cancer registry staff. We developed the cancer surveillance systems, context, outcomes, and process evaluation (CS-SCOPE) framework to explain the ways in which cancer registry data quality, timeliness, and efficiency are impacted by external and internal contextual factors and interrelated process and content factors. The framework includes implementation measures to understand acceptability of process changes along with outcome measures to assess DMI initiation and ongoing sustainability. The framework's components and structures can be tailored for use in other DMI evaluations.
Background Breast cancer remains a leading cause of morbidity and mortality among women in the United States. Previous analyses show that breast cancer incidence increased from 1999 to 2018. The purpose of this article is to examine trends in breast cancer mortality. Methods Analysis of 1999 to 2020 mortality data from the Centers for Disease Control and Prevention, National Center for Health Statistics, among women by race/ethnicity, age, and US Census region. Results It was found that overall breast cancer mortality is decreasing but varies by race/ethnicity, age group, and US Census region. The largest decrease in mortality was observed among non-Hispanic White women, women aged 45 to 64 years of age, and women living in the Northeast; whereas the smallest decrease in mortality was observed among non-Hispanic Asian or Pacific Islander women, women aged 65 years or older, and women living in the South. Conclusion This report provides national estimates of breast cancer mortality from 1999 to 2020 by race/ethnicity, age group, and US Census region. The decline in breast cancer mortality varies by demographic group. Disparities in breast cancer mortality have remained consistent over the past two decades. Using high-quality cancer surveillance data to estimate trends in breast cancer mortality may help health care professionals and public health prevention programs tailor screening and diagnostic interventions to address these disparities.
Breast cancer is commonly diagnosed among women, accounting for approximately 30% of all cancer cases reported among women.* A slight annual increase in breast cancer incidence occurred in the United States during 2013-2017 (1). To examine trends in breast cancer incidence among women aged ≥20 years by race/ethnicity and age, CDC analyzed data from U.S. Cancer Statistics (USCS) during 1999-2018. Overall, breast cancer incidence rates among women decreased an average of 0.3% per year, decreasing 2.1% per year during 1999-2004 and increasing 0.3% per year during 2004-2018. Incidence increased among non-Hispanic Asian or Pacific Islander women and women aged 20-39 years and decreased among non-Hispanic White women and women aged 50-64 and ≥75 years. The U.S. Preventive Services Task Force currently recommends biennial screening mammography for women aged 50-74 years (2). These findings suggest that women aged 20-49 years might benefit from discussing potential breast cancer risk and ways to reduce risk with their health care providers. Further examination of breast cancer trends by demographic characteristics might help tailor breast cancer prevention and control programs to address state- or county-level incidence rates† and help prevent health disparities.
Objectives We aim to assess external and internal attributes and operations of the Centers for Disease Control and Prevention (CDC)'s National Program of Cancer Registries (NPCR) central cancer registries by their consistency in meeting national data quality standards. Methods The NPCR 2017 Program Evaluation Instrument (PEI) data were used to assess registry operational attributes, including adoption of electronic reporting, compliance with reporting, staffing, and software used among 46 NPCR registries. These factors were stratified by (1) registries that met the NPCR 12-month standards for all years 2014-2017; (2) registries that met the NPCR 12-month standards at least once in 2014-2017 and met the NPCR 24-month standards for all years 2014-2017; and (3) registries that did not meet the NPCR 24-month standards for all years 2014-2017. Statistical tests helped identify significant differences among registries that consistently, sometimes, or seldom/never achieved data standards. Results Registries that always met the standards had a higher level of electronic reporting and a higher compliance with reporting among hospitals than registries that sometimes or seldom/never met the standards. Although not a statistically significant finding, the same registries also had a higher proportion of staffing positions filled, a higher proportion of certified tumor registrars, and more quality assurance and information technology staff. Conclusions This information may be used to understand the importance of various factors and characteristics, including the adoption of electronic reporting, that may be associated with a registry's ability to consistently meet NPCR standards. The findings may be helpful in identifying best practices for processing high-quality cancer data.
Background Disparities in cancer incidence have not been described for urban American Indian/Alaska Native (AI/AN) populations. The purpose of the present study was to examine incidence rates (2008‐2017) and trends (1999‐2017) for leading cancers in urban non‐Hispanic AI/AN (NH AI/AN) compared to non‐Hispanic White (NHW) populations living in the same urban areas. Methods Incident cases from population‐based cancer registries were linked with the Indian Health Service patient registration database for improved racial classification of NH AI/AN populations. This study was limited to counties in Urban Indian Health Organization service areas. Analyses were conducted by geographic region. Age‐adjusted rates (per 100,000) and trends (joinpoint regression) were calculated for leading cancers. Results Rates of colorectal, liver, and kidney cancers were higher overall for urban NH AI/AN compared to urban NHW populations. By region, rates of these cancers were 10% to nearly 4 times higher in NH AI/AN compared to NHW populations. Rates for breast, prostate, and lung cancer were lower in urban NH AI/AN compared to urban NHW populations. Incidence rates for kidney, liver, pancreatic, and breast cancers increased from 2% to nearly 7% annually between 1999 to 2017 in urban NH AI/AN populations. Conclusions This study presents cancer incidence rates and trends for the leading cancers among urban NH AI/AN compared to urban NHW populations for the first time, by region, in the United States. Elevated risk of certain cancers among urban NH AI/AN populations and widening cancer disparities highlight important health inequities and missed opportunities for cancer prevention in this population.
PURPOSEThe CDC's National Program of Cancer Registries has expanded the use of electronic reporting to collect more timely information on newly diagnosed cancers. The adoption, implementation, and use of electronic reporting vary significantly among central cancer registries. We identify factors affecting the adoption of electronic reporting among these registries.METHODSDirectors and data managers of nine National Program of Cancer Registries took part in separate 1-hour telephone interviews in early 2019. Directors were asked about their registry's key data quality goals; staffing, resources, and tools used to aid processes; their definition and self-perception of electronic reporting adoption; key helpers and challenges; and cost and sustainability implications for adoption of electronic reporting. Data managers were asked about specific data collection processes, software applications, electronic reporting adoption and self-perception, information technology infrastructure, and helpers and challenges to data collection and processing, data quality, and sustainability of approach.RESULTSLarger registries identified organizational capacity and technical expertise as key aides. Other help for implementing electronic reporting processes came from partnerships, funding availability, management support, legislation, and access to an interstate data exchange. Common challenges among lower adopters included lack of capacity at both registry and data source levels, insufficient staffing, and a lack of information technology or technical support. Other challenges consisted of automation and interoperability of software, volume of cases received, state political environment, and quality of data received.CONCLUSIONFeedback from the formative evaluation yielded several useful solutions that can guide implementation of electronic reporting and help refine the technical assistance provided to registries. Our findings may help guide future process and economic evaluations of electronic reporting and identify best practices to strengthen registry operations.
Plasma cell myeloma (also called multiple myeloma), solitary plasmacytoma, and extramedullary plasmacytoma are primarily diseases of the elderly. Evidence suggests an association between excess body weight and multiple myeloma. Few population‐based studies have examined incidence and mortality of each site in one study. We analyzed incidence and death rates by site (solitary plasmacytoma, extramedullary plasmacytoma, and multiple myeloma) by gender, age, race/ethnicity, and rural‐urban status among adult males and females (aged 20 years or older) in the United States during 2003‐2016. Trends were characterized as average annual percentage change (AAPC) in rates. During 2003‐2016, overall incidence rates among adults were 0.45 for solitary plasmacytoma, 0.09 for extramedullary plasmacytoma, and 8.47 for multiple myeloma per 100,000 persons. Incidence rates for multiple myeloma increased during 2003‐2016 among non‐Hispanic whites (AAPC = 1.78%) and non‐Hispanic blacks (2.98%) 20‐49 years of age; non‐Hispanic whites (1.17%) and non‐Hispanic blacks (1.24%) 50‐59 years of age; and whites non‐Hispanic (0.91%), and non‐Hispanic blacks (0.96%). During 2003‐2016 overall myeloma (extramedullary plasmacytoma and multiple myeloma) death rates among adults was 4.77 per 100,00 persons. Myeloma death rates decreased during 2003‐2016 among non‐Hispanic white (AAPC = −1.23%) and Hispanic (−1.34%) women; and non‐Hispanic white (−0.74%), non‐Hispanic American Indian/Alaska Native (−3.05%) men. The US population is projected to become older and will have a larger proportion of persons who have had an earlier and longer exposure to excess body weight. The potential impact of these population changes on myeloma incidence and mortality can be monitored with high‐quality cancer surveillance data.
BACKGROUND:Cancer incidence and death rates in the United States are often published at the county or statelevels; examining cancer statistics at the congressional district (CD) level allows decision makers to better understand how cancer is impacting the specific populations they represent.METHODS:Cancer incidence data were obtained from the Centers for Disease Control and Prevention's National Program of Cancer Registries and the National Cancer Institute's Surveillance, Epidemiology, and End Results Program. Mortality data were obtained from the National Center for Health Statistics. CD rates were estimated by assigning the county-level age-adjusted rates to the census block and weighting those by the block population proportion of the CD. Those weighted rates were then aggregated over the blocks within the CD to estimate the district rate. Incidence rate estimates for 406 CDs and death rate estimates for 436 CDs were reported according to the boundaries for the 115th Congress of the United States. Maps showing rate estimates for all cancers combined, lung/bronchus, colorectal, female breast, cervical, and prostate cancer are presented by sex and race/ethnicity.RESULTS:The distribution of cancer incidence and death rates by CDs show similar patterns to those that have been observed at the county and state levels, with the highest cancer incidence and death rates observed in CDs in the South and Eastern regions.CONCLUSION:This examination of cancer rates at the CD-level provides data that can be used to inform cancer control strategies at the local and national levels. Displaying the data with the Data Visualizations tool makes it easily accessible to the public and decision makers.
Breast cancer among males in the United States is rare; approximately 2,300 new cases and 500 associated deaths were reported in 2017, accounting for approximately 1% of all breast cancers.* Risk for male breast cancer increases with increasing age (1), and compared with women, men receive diagnoses later in life and often at a later stage of disease (1). Gradual improvement in breast cancer survival from 1976-1985 to 1996-2005 has been more evident for women than for men (1). Studies examining survival differences among female breast cancer patients observed that non-Hispanic White (White) females had a higher survival than non-Hispanic Black (Black) females (2), but because of the rarity of breast cancer among males, few studies have examined survival differences by race or other factors such as age, stage, and geographic region. CDC's National Program of Cancer Registries (NPCR)† data were used to examine relative survival of males with breast cancer diagnosed during 2007-2016 by race/ethnicity, age group, stage at diagnosis, and U.S. Census region. Among males who received a diagnosis of breast cancer during 2007-2016, 1-year relative survival was 96.1%, and 5-year relative survival was 84.7%. Among characteristics examined, relative survival varied most by stage at diagnosis: the 5-year relative survival for males was higher for cancers diagnosed at localized stage (98.7%) than for those diagnosed at distant stage (25.9%). Evaluation of 1-year and 5-year relative survival among males with breast cancer might help guide health care decisions regarding early detection of male breast cancer and establishing programs to support men at high risk for breast cancer and male breast cancer survivors.
Cancers of the oral cavity and pharynx account for 3% of cancers diagnosed in the United States* each year. Cancers at these sites can differ anatomically and histologically and might have different causal factors, such as tobacco use, alcohol use, and infection with human papillomavirus (HPV) (1). Incidence of combined oral cavity and pharyngeal cancers declined during the 1980s but began to increase around 1999 (2,3). Because tobacco use has declined in the United States, accompanied by a decrease in incidence of many tobacco-related cancers, researchers have suggested that the increase in oral cavity and pharynx cancers might be attributed to anatomic sites with specific cell types in which HPV DNA is often found (4,5). U.S. Cancer Statistics† data were analyzed to examine trends in incidence of cancers of the oral cavity and pharynx by anatomic site, sex, race/ethnicity, and age group. During 2007-2016, incidence rates increased for cancers of the oral cavity and pharynx combined, base of tongue, anterior tongue, gum, tonsil, oropharynx, and other oral cavity and pharynx. Incidence rates declined for cancers of the lip, floor of mouth, soft palate and uvula, hard palate, hypopharynx, and nasopharynx, and were stable for cancers of the cheek and other mouth and salivary gland. Ongoing implementation of proven population-based strategies to prevent tobacco use initiation, promote smoking cessation, reduce excessive alcohol use, and increase HPV vaccination rates might help prevent cancers of the oral cavity and pharynx.