Patterns and Differences in Lung Cancer Treatment - United States, 2015-2020.

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 persons ages ≥20 years 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 ages >45 years (odds ratio [OR] range=0.08-0.67); 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); resided in a non-metropolitan 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 one of the four 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 upon factors underlying differences.

The National Cancer Database Conforms to the Standardized Framework for Registry and Data Quality.

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.

Consensus-based framework for evaluating data modernization initiatives: the case of cancer registration and electronic reporting.

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.

Counts, incidence rates, and trends of pediatric cancer in the United States, 2003-2019.

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 younger than 20 years of age diagnosed with malignant tumors between 2003 and 2019. We calculated the average annual percent change (APC) and APC using joinpoint regression. Rates and trends were stratified by demographic and geographic characteristics and by cancer type. RESULTS: With 248 749 cases reported between 2003 and 2019, the overall cancer incidence rate was 178.3 per 1 million; incidence rates were highest for leukemia (46.6), central nervous system neoplasms (30.8), and lymphoma (27.3). Rates were highest for males, children 0 to 4 years of age, Non-Hispanic White children and adolescents, those in the Northeast census region, the top 25% of counties by economic status, and metropolitan counties with a population of 1 million people or more. Although the overall incidence rate of pediatric cancer increased 0.5% per year on average between 2003 and 2019, the rate increased between 2003 and 2016 (APC = 1.1%), and then decreased between 2016 and 2019 (APC = -2.1%). Between 2003 and 2019, rates of leukemia, lymphoma, hepatic tumors, bone tumors, and thyroid carcinomas increased, while melanoma rates decreased. Rates of central nervous system neoplasms increased until 2017, and then decreased. Rates of 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.

Cancer survival in the United States 2007-2016: Results from the National Program of Cancer Registries.

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.

Trends in breast cancer mortality by race/ethnicity, age, and US census region, United States─1999-2020.

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.

Cancer disparities among non-Hispanic urban American Indian and Alaska Native populations in the United States, 1999-2017.

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.

Trends in Breast Cancer Incidence, by Race, Ethnicity, and Age Among Women Aged ≥20 Years - United States, 1999-2018.

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.

Operational Characteristics of Central Cancer Registries that Support the Generation of High-Quality Surveillance Data.

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.

Factors Affecting the Adoption of Electronic Data Reporting and Outcomes Among Selected Central Cancer Registries of the National Program of Cancer Registries.

PURPOSE: The 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. METHODS: Directors 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. RESULTS: Larger 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. CONCLUSION: Feedback 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.

Incidence and Mortality of Cancers of the Biliary Tract, Gallbladder, and Liver by Sex, Age, Race/Ethnicity, and Stage at Diagnosis: United States, 2013 to 2017.

BACKGROUND: Few population-based studies have examined incidence and mortality of cancers of the biliary tract, including intrahepatic bile duct, extrahepatic bile duct, ampulla of Vater, and overlapping or other lesions of the biliary tract in one study. METHODS: To further the understanding of recent rates of biliary tract cancers, we used population-based data, to examine incidence and mortality during 2013 to 2017. We examined how rates varied by sex, age, race/ethnicity, U.S. census region, and stage at diagnosis. RESULTS: Intrahepatic bile duct was the most common biliary tract cancer, with an incidence rate of 1.49 per 100,000 persons. Cancer incidence rates per 100,000 persons were 0.96 for extrahepatic bile duct, 0.45 for ampulla of Vater, and 0.24 for overlapping or other lesions of the biliary tract. Cancer death rates per 100,000 persons were 1.66 for intrahepatic bile duct and 0.45 for other biliary tract. Intrahepatic bile duct incidence and death rates were higher among males than females, higher among Hispanic and Asian and Pacific Islander persons compared with non-Hispanic Whites, and higher in the Northeast and in urban counties. CONCLUSIONS: This report provides national estimates of these rare biliary tract cancers. IMPACT: Key interventions targeted to high-risk populations may help reduce incidence and mortality of cancers of the biliary tract by improving primary prevention through strategies to reduce tobacco and alcohol use, control overweight and obesity, and promote hepatitis B vaccination and use of syringe service programs meant to curb the transmission of infectious diseases such as viral hepatitis.

Trends in solitary plasmacytoma, extramedullary plasmacytoma, and plasma cell myeloma incidence and myeloma mortality by racial-ethnic group, United States 2003-2016.

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.

Breast Cancer Survival Among Males by Race, Ethnicity, Age, Geographic Region, and Stage - United States, 2007-2016.

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.

Pediatric cancer mortality and survival in the United States, 2001-2016.

BACKGROUND: Although pediatric cancer mortality and survival have improved in the United States over the past 40 years, differences exist by age, race/ethnicity, cancer site, and economic status. To assess progress, this study examined recent mortality and survival data for individuals younger than 20 years. METHODS: Age-adjusted death rates were calculated with the National Vital Statistics System for 2002-2016. Annual percent changes (APCs) and average annual percent changes (AAPCs) were calculated with joinpoint regression. Five-year relative survival was calculated on the basis of National Program of Cancer Registries data for 2001-2015. Death rates and survival were estimated overall and by sex, 5-year age group, race/ethnicity, cancer type, and county-based economic markers. RESULTS: Death rates decreased during 2002-2016 (AAPC, -1.5), with steeper declines during 2002-2009 (APC, -2.6), and then plateaued (APC, -0.4). Leukemia and brain cancer were the most common causes of death from pediatric cancer, and brain cancer surpassed leukemia in 2011. Death rates decreased for leukemia and lymphoma but were unchanged for brain, bone, and soft-tissue cancers. From 2001-2007 to 2008-2015, survival improved from 82.0% to 85.1%. Survival was highest in both periods among females, those aged 15 to 19 years, non-Hispanic Whites, and those in counties in the top 25% by economic status. Survival improved for leukemias, lymphomas, and brain cancers but plateaued for bone and soft-tissue cancers. CONCLUSIONS: Although overall death rates have decreased and survival has increased, differences persist by sex, age, race/ethnicity, cancer type, and economic status. Improvements in pediatric cancer outcomes may depend on improving therapies, access to care, and supportive and long-term care.

Relative survival after diagnosis with a primary brain or other central nervous system tumor in the National Program of Cancer Registries, 2004 to 2014.

BACKGROUND: The majority of reported cancer survival statistics in the United States are generated using the National Cancer Institute's publicly available Surveillance, Epidemiology, and End Results (SEER) data, which prior to 2019 represented 28% of the US population (now 37%). In the case of rare cancers or special subpopulations, data sets based on a larger portion of the US population may contribute new insights into these low-incidence cancers. The purpose of this study is to characterize the histology-specific survival patterns for all primary malignant and nonmalignant primary brain tumors in the United States using the Centers for Disease Control and Prevention's National Program of Cancer Registries (NPCR). METHODS: Survival data were obtained from the NPCR (includes data from 39 state cancer registries, representing 81% of the US population). Relative survival rates (RS) with 95% CI were generated using SEER*Stat 8.3.5 from 2004 to 2014 by behavior, histology, sex, race/ethnicity, and age at diagnosis. RESULTS: Overall, there were 488 314 cases from 2004 to 2014. Overall 5-year RS was 69.8% (95% CI = 69.6%-69.9%). Five-year RS was 35.9% (95% CI = 35.6%-36.1%) for malignant and 90.2% (95% CI = 90.1%-90.4%) for nonmalignant tumors. Pilocytic astrocytoma had the longest 5-year RS (94.2%, 95% CI = 93.6%-94.6%) of all glioma subtypes, whereas glioblastoma had the shortest 5-year RS (6.1%, 95% CI = 6.0%-6.3%). Nonmalignant nerve sheath tumors had the longest 5-year RS (99.3%, 95% CI = 99.1%-99.4%). Younger age and female sex were associated with increased survival for many histologies. CONCLUSIONS: Survival after diagnosis with primary brain tumor varies by behavior, histology, and age. Using such a database that includes more than 80% of the US population may represent national survival patterns.

Trends in Incidence of Cancers of the Oral Cavity and Pharynx - United States 2007-2016.

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.

Breast and colorectal cancer recurrence and progression captured by five U.S. population-based registries: Findings from National Program of Cancer Registries patient-centered outcome research.

OBJECTIVES: Cancer recurrence is a meaningful patient outcome that is not captured in population-based cancer surveillance. This project supported National Program of Cancer Registries central cancer registries in five U.S. states to determine the disease course of all breast and colorectal cancer cases. The aims were to assess the feasibility of capturing disease-free (DF) status and subsequent cancer outcomes and to explore analytic approaches for future studies. METHODS: Data were obtained on 11,769 breast and 6033 colorectal cancer cancers diagnosed in 2011. Registry-trained abstractors reviewed medical records from multiple sources for up to 60 months to determine documented DF status, recurrence, progression and residual disease. We described the occurrence of these patient-centered outcomes along with analytic considerations when determining time-to-event outcomes and recurrence-free survival. RESULTS: Disease-free status was determined on all but 3.8 % of cancer cases. Among 14,458 cases that became DF, 6.1 % of breast and 13.0 % of colorectal cancer cases had a documented recurrence. Recurrence-free survival varied by stage; for stage II-III cancers at 48 months, 83.2 % of female breast and 69.2 % of colorectal cancer patients were alive without recurrence. The ability to distinguish between progression and residual disease among never disease-free patients limited our ability to examine progression as an outcome. CONCLUSIONS: This study demonstrated that population-based registries given intense support and resources can capture recurrence and offer a generalizable picture of cancer outcomes. Further work on refining definitions, sampling strategies, and novel approaches to capture recurrence could advance the ability of a national cancer surveillance system to contribute to patient-centered outcomes research.

Trends in short-term survival from distant-stage cutaneous melanoma in the United States, 2001-2013 (CONCORD-3).

BACKGROUND: Survival from metastatic cutaneous melanoma is substantially lower than for localized disease. Treatments for metastatic melanoma have been limited, but remarkable clinical improvements have been reported in clinical trials in the last decade. We described the characteristics of US patients diagnosed with cutaneous melanoma during 2001-2013 and assessed trends in short-term survival for distant-stage disease. METHODS: Trends in 1-year net survival were estimated using the Pohar Perme estimator, controlling for background mortality with life tables of all-cause mortality rates by county of residence, single year of age, sex, and race for each year 2001-2013. We fitted a flexible parametric survival model on the log-hazard scale to estimate the effect of race on the hazard of death because of melanoma and estimated 1-year net survival by race. RESULTS: Only 4.4% of the 425 915 melanomas were diagnosed at a distant stage, cases diagnosed at a distant stage are more commonly men, older patients, and African Americans. Age-standardized, 1-year net survival for distant-stage disease was stable at approximately 43% during 2001-2010. From 2010 onward, survival improved rapidly, reaching 58.9% (95% confidence interval = 56.6% to 61.2%) for patients diagnosed in 2013. Younger patients experienced the largest improvement. Survival for distant-stage disease increased in both Blacks and Whites but was consistently lower in Blacks. CONCLUSIONS: One-year survival for distant-stage melanoma improved during 2001-2013, particularly in younger patients and those diagnosed since 2010. This improvement may be a consequence of the introduction of immune-checkpoint-inhibitors and other targeted treatments for metastatic and unresectable disease. Persistent survival inequalities exist between Blacks and Whites, suggesting differential access to treatment.