Journal Of The National Cancer Institute. Monographs[JOURNAL]
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200 papers
Cannabis and opioid perceptions, co-use, and substitution among patients across 4 NCI-Designated Cancer Centers.
Ashare RL, Worster B, Nugent SM … +5 more , Smith DM, Morasco BJ, Leader AE, Case AA, Meghani SH
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39108237 · Full text
Prescription opioids are used for managing pain in persons with cancer, however, there are socioeconomic and racial disparities in medication access. Cannabis is increasingly used for cancer symptom management and as an...
Prescription opioids are used for managing pain in persons with cancer, however, there are socioeconomic and racial disparities in medication access. Cannabis is increasingly used for cancer symptom management and as an opioid alternative. Limited data are available about patterns of opioid and cannabis use among patients with cancer. We used survey data from 4 National Cancer Institute-designated cancer centers in 3 states (n = 1220) to assess perceptions, use of cannabis and opioids for pain, their substitution, and racial and ethnic differences in each outcome. Compared with White patients, Black patients were less likely to use opioids for pain (odds ratio [OR] = 0.66; P = .035) and more likely to report that cannabis was more effective than opioids (OR = 2.46; P = .03). Race effects were mitigated (P > .05) after controlling for socioeconomic factors. Further research is needed to understand cannabis and opioid use patterns and how overlapping social determinants of health create a disadvantage in cancer symptom management for Black patients.
Overview of cancer patient perspectives on cannabis use during treatment.
Helzlsouer KJ, Rosenfield SM, Freedman AN … +1 more , Ellison GL
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39108236 · Full text
Expanding legal access to medical cannabis across the United States increases availability and use of cannabis products to manage cancer-related symptoms and treatment side effects despite the lack of research-based evid...
Expanding legal access to medical cannabis across the United States increases availability and use of cannabis products to manage cancer-related symptoms and treatment side effects despite the lack of research-based evidence on its potential benefits and harms. To address knowledge gaps in how cancer patients access and use cannabis, their perceived risks and benefits with its use, and whether cancer patients discuss cannabis use with their healthcare providers during treatment, the National Cancer Institute (NCI) supported 12 NCI-designated comprehensive cancer centers to conduct surveys, which included NCI standardized core questions on cannabis use during treatment, among their cancer patient populations. This overview highlights key results from the articles contained in the monograph, which includes a summary of the results of core questions across all centers and reports from individual or groups of cancer centers on survey results related to the sourcing of cannabis, associated cost, behavioral factors associated with cannabis use (such as smoking, drinking, or using other substances), patient-provider communication on cannabis use during treatment, ethnic variations in patterns, sources, and reasons for cannabis use as well as methodologic concerns related to survey data analysis. The results of these surveys of cannabis use after the diagnosis of cancer lay the groundwork for much-needed research to answer the questions of benefits and harms, including potential interactions with cancer treatments for cancer patients.
Cancer stage and consideration of cannabis use among adult cancer survivors in Southern California.
Kasiri N, Banegas M, Nodora J … +5 more , Martinez ME, Strong D, Doran N, McDaniels-Davidson C, Parada H
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39108235 · Full text
BACKGROUND: The benefits of cannabis in symptom management among cancer survivors are widely acknowledged; however, patterns of cannabis use by cancer stage at diagnosis are unknown. METHODS: Here, we examined the associ...
BACKGROUND: The benefits of cannabis in symptom management among cancer survivors are widely acknowledged; however, patterns of cannabis use by cancer stage at diagnosis are unknown. METHODS: Here, we examined the association between cancer stage at diagnosis and consideration of cannabis use since diagnosis. We analyzed cross-sectional survey data from 954 cancer survivors, weighted to be representative of a National Cancer Institute-Designated Comprehensive Cancer Center's patient population. We used survey-weighted multivariable logistic regression to examine the association between cancer stage at diagnosis (advanced [III/IV] versus non-advanced [I/II]) and consideration of cannabis use (yes versus no) since diagnosis. RESULTS: Sixty percent of the population was diagnosed with non-advanced stages of cancer, and 42% had considered using cannabis since diagnosis. The odds of consideration of cannabis use were 63% higher (odds ratio = 1.63, 95% confidence interval = 1.06 to 2.49) among cancer survivors diagnosed at stages III/IV than among those diagnosed at stages I/II. CONCLUSION: Cancer stage may be a predictor of consideration of cannabis use after diagnosis.
Cannabis use and patient-reported outcomes among patients at a comprehensive cancer center.
Gonzalez BD, Li X, Martinez YC … +5 more , Jim HSL, Oswald LB, Islam JY, Turner K, Egan KM
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39108234 · Full text
BACKGROUND: Patients with cancer report increasing rates of cannabis use, often to manage symptoms and toxicities. The efficacy and safety of cannabis, however, for some use cases remains unclear. To better understand ch...
BACKGROUND: Patients with cancer report increasing rates of cannabis use, often to manage symptoms and toxicities. The efficacy and safety of cannabis, however, for some use cases remains unclear. To better understand characteristics of patients with cancer who report using cannabis, we examined data from a cannabis use survey of among patients with cancer seen at a National Cancer Institute-Designated Cancer Center. METHODS: In late 2021, patients with cancer (N = 1608) treated between July 2017 and December 2019 provided cannabis use data. Additional data were obtained from medical records data and routine patient-reported outcomes collected for clinical purposes. Univariable analyses and multivariable regression analyses were conducted to identify correlates of cannabis use at different stages in the cancer care trajectory. RESULTS: Rates of self-reported cannabis use by patients with cancer were 59% before cancer diagnosis and 47% after diagnosis. Longitudinal rates of cannabis use were 29% for no cannabis use, 23% before diagnosis, 12% after diagnosis, and 35% for both before and after diagnosis. Demographic factors associated with cannabis use included age, sex, race, and educational achievement. Tobacco use and binge drinking were associated with higher odds of cannabis use. Cannabis use was also associated with greater self-reported interference with physical functioning due to pain and interference with social functioning due to health problems. CONCLUSIONS: We found high rates of cannabis use among patients with cancer, both before and after their cancer diagnosis. Future studies should further investigate psychosocial factors associated with cannabis use among patients with cancer as well as psychosocial outcomes among patients with cancer using cannabis.
Data quality in a survey of registered medical cannabis users with cancer: nonresponse and measurement error.
Ziegenfuss JY, Parsons HM, Blaes AH … +6 more , Lindgren B, Andersen J, Park S, Jewett PI, Gupta A, Zylla DM
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39108233 · Full text
Cannabis use among individuals with cancer is best understood using survey self-report. As cannabis remains federally illegal, surveys could be subject to nonresponse and measurement issues impacting data quality. We sur...
Cannabis use among individuals with cancer is best understood using survey self-report. As cannabis remains federally illegal, surveys could be subject to nonresponse and measurement issues impacting data quality. We surveyed individuals using medical cannabis for a cancer-related condition in the Minnesota Medical Cannabis Program (MCP). Although survey responders are older, there are no differences by race and ethnicity, gender, or receipt of reduced cannabis registry enrollment fee. Responders made a more recent purchase and more recently completed an independent symptom assessment for the registry than nonresponders, suggesting some opportunity for nonresponse error. Among responders, self-report and MCP administrative data with respect to age, race, gender, registry certification, and cannabis purchase history were similar. Responders were less likely to report receipt of Medicaid than would be expected based on registry low-income enrollment eligibility. Although attention should be paid to potential for nonresponse error, surveys are a reliable tool to ascertain cannabis behavior patterns in this population.
Patient-provider communication about the use of medical cannabis for cancer symptoms: a cross-sectional study.
Turner K, Nguyen OT, Islam JY … +6 more , Rajasekhara S, Martinez YC, Tabriz AA, Gonzalez BD, Jim HSL, Egan KM
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39108232 · Full text
BACKGROUND: There has been limited study regarding patient-provider communication about medical cannabis for cancer symptom management. To address this gap, this study assesses the determinants and prevalence of patient-...
BACKGROUND: There has been limited study regarding patient-provider communication about medical cannabis for cancer symptom management. To address this gap, this study assesses the determinants and prevalence of patient-provider communication about the use of medical cannabis for cancer symptoms at a National Cancer Institute-designated Comprehensive Cancer Center. METHODS: Individuals who completed cancer treatment from July 2017 to December 2019 were invited to participate in a survey regarding medical cannabis. An electronic survey was administered in English and Spanish from August to November 2021 and completed by 1592 individuals (response rate = 17.6%). RESULTS: About one-third (33.5%) of participants reported discussing medical cannabis for cancer symptom management with a health-care provider. Controlling for other factors, individuals with malnutrition and/or cachexia had higher odds (odds ratio [OR] = 2.30, 95% confidence interval [CI] = 1.50 to 3.53) of reporting patient-provider discussions compared with individuals without malnutrition and/or cachexia. Similarly, individuals with nausea had higher odds (OR = 1.94, 95% CI = 1.44 to 2.61) of reporting patient-provider discussions compared with individuals without nausea. A smaller percentage (15.6%) of participants reported receiving a recommendation for medical cannabis for cancer symptom management. Among individuals who reported using cannabis, a little over one-third (36.1%) reported not receiving instructions from anyone on how to use cannabis or determine how much to take. CONCLUSIONS: Overall, our study suggests that patient-provider communication about medical cannabis for cancer symptom management is limited. As interest and use of medical cannabis continues to grow among cancer patients, there is a need to ensure patients have access to high quality patient-provider communication.
Ethnic differences in the patterns, sources, and reasons for cannabis use among cancer patients at an NCI-Designated Cancer Center.
Vidot DC, Baral A, Hernandez-Ortega N … +5 more , Diggs BA, Islam JY, Camacho-Rivera M, Martinez C, Penedo F
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39108231 · Full text
OBJECTIVE: This study aims to describe patterns, sources, and reasons for cannabis use among cancer patients by ethnic group. METHODS: Data are from a cross-sectional study of 416 surveys collected via RedCap anonymously...
OBJECTIVE: This study aims to describe patterns, sources, and reasons for cannabis use among cancer patients by ethnic group. METHODS: Data are from a cross-sectional study of 416 surveys collected via RedCap anonymously from adult cancer patients seen at a National Cancer Institute-designated comprehensive cancer center within the last 5 years. A harmonized survey was created with 11 other National Cancer Institute centers to assess cannabis use patterns, sources, and reasons for use. Sociodemographics and cancer details were also collected via self-report. Descriptive statistics by ethnic group were compared using χ2 and Fisher exact tests. RESULTS: Among the sample (age mean = 50.4 [15.7] years; 53% male; 8.3% lesbian, gay, bisexual, transgender, queer; 46.7% Hispanic and Latinx individuals), 69.6% reported lifetime use of cannabis, 33.7% began cannabis use after cancer diagnosis, 48.1% of those consuming cannabis did not have a prescription for cannabis, and 29.4% of cannabis users consumed daily. The frequency of cannabis use (P = .04) and reasons for cannabis use (P = .02) varied by ethnic group. Sleep and pain were the most prevalent reasons for use among the Hispanics and Latinx populations; pain, mental health management, and neuropathy were the most prevalent reasons for cannabis use among non-Hispanic White individuals. CONCLUSIONS: Patterns and reasons for cannabis use differed among cancer patients by ethnic group in this exploratory cross-sectional study aimed to provide data for more rigorous study. Understanding these distinctions are pivotal in conducting more rigorous studies that address the unique needs of diverse populations utilizing cannabis for managing cancer-related symptoms.
Reporting tumor genomic test results to SEER registries via linkages.
Petkov VI, Byun JS, Ward KC … +21 more , Schussler NC, Archer NP, Bentler S, Doherty JA, Durbin EB, Gershman ST, Cheng I, Insaf T, Gonsalves L, Hernandez BY, Koch L, Liu L, Monnereau A, Morawski BM, Schwartz SM, Stroup A, Wiggins C, Wu XC, Bonds S, Negoita S, Penberthy L
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102888 · Full text
BACKGROUND: Precision medicine has become a mainstay of cancer care in recent years. The National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) Program has been an authoritative source of canc...
BACKGROUND: Precision medicine has become a mainstay of cancer care in recent years. The National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) Program has been an authoritative source of cancer statistics and data since 1973. However, tumor genomic information has not been adequately captured in the cancer surveillance data, which impedes population-based research on molecular subtypes. To address this, the SEER Program has developed and implemented a centralized process to link SEER registries' tumor cases with genomic test results that are provided by molecular laboratories to the registries. METHODS: Data linkages were carried out following operating procedures for centralized linkages established by the SEER Program. The linkages used Match*Pro, a probabilistic linkage software, and were facilitated by the registries' trusted third party (an honest broker). The SEER registries provide to NCI limited datasets that undergo preliminary evaluation prior to their release to the research community. RESULTS: Recently conducted genomic linkages included OncotypeDX Breast Recurrence Score, OncotypeDX Breast Ductal Carcinoma in Situ, OncotypeDX Genomic Prostate Score, Decipher Prostate Genomic Classifier, DecisionDX Uveal Melanoma, DecisionDX Preferentially Expressed Antigen in Melanoma, DecisionDX Melanoma, and germline tests results in Georgia and California SEER registries. CONCLUSIONS: The linkages of cancer cases from SEER registries with genomic test results obtained from molecular laboratories offer an effective approach for data collection in cancer surveillance. By providing de-identified data to the research community, the NCI's SEER Program enables scientists to investigate numerous research inquiries.
Toward real-time reporting of cancer incidence: methodology, pilot study, and SEER Program implementation.
Chen HS, Negoita S, Schwartz S … +7 more , Hsu E, Hafterson J, Coyle L, Stevens J, Fernandez A, Potts M, Feuer EJ
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102887 · Full text
BACKGROUND: A lag time between cancer case diagnosis and incidence reporting impedes the ability to monitor the impact of recent events on cancer incidence. Currently, the data submission standard is 22 months after a di...
BACKGROUND: A lag time between cancer case diagnosis and incidence reporting impedes the ability to monitor the impact of recent events on cancer incidence. Currently, the data submission standard is 22 months after a diagnosis year ends, and the reporting standard is 27.5 months after a diagnosis year ends. This paper presents the National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) Program's efforts to minimize the lag and achieve "real-time" reporting, operationalized as submission within 2 months from the end of a diagnosis year. METHODS: Technology for rapidly creating a consolidated tumor case (CTC) from electronic pathology (e-path) reports is described. Statistical methods are extended to adjust for biases in incidence rates due to reporting delays for the most recent diagnosis years. RESULTS: A registry pilot study demonstrated that real-time submissions can approximate rates obtained from 22-month submissions after adjusting for reporting delays. A plan to be implemented across the SEER Program rapidly ascertains unstructured e-path reports and uses machine learning algorithms to translate the reports into the core data items that comprise a CTC for incidence reporting. Across the program, cases were submitted 2 months after the end of the calendar year. Registries with the most promising baseline values and a willingness to modify registry operations have joined a program to become certified as real-time reporting. CONCLUSION: Advances in electronic reporting, natural language processing, registry operations, and statistical methodology, energized by the SEER Program's mobilization and coordination of these efforts, will make real-time reporting an achievable goal.
The SEER Program's evolution: supporting clinically meaningful population-level research.
Penberthy L, Friedman S
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102886 · Full text
Although the Surveillance, Epidemiology, and End Results (SEER) Program has maintained high standards of quality and completeness, the traditional data captured through population-based cancer surveillance are no longer...
Although the Surveillance, Epidemiology, and End Results (SEER) Program has maintained high standards of quality and completeness, the traditional data captured through population-based cancer surveillance are no longer sufficient to understand the impact of cancer and its outcomes. Therefore, in recent years, the SEER Program has expanded the population it covers and enhanced the types of data that are being collected. Traditionally, surveillance systems collected data characterizing the patient and their cancer at the time of diagnosis, as well as limited information on the initial course of therapy. SEER performs active follow-up on cancer patients from diagnosis until death, ascertaining critical information on mortality and survival over time. With the growth of precision oncology and rapid development and dissemination of new diagnostics and treatments, the limited data that registries have traditionally captured around the time of diagnosis-although useful for characterizing the cancer-are insufficient for understanding why similar patients may have different outcomes. The molecular composition of the tumor and genetic factors such as BRCA status affect the patient's treatment response and outcomes. Capturing and stratifying by these critical risk factors are essential if we are to understand differences in outcomes among patients who may be demographically similar, have the same cancer, be diagnosed at the same stage, and receive the same treatment. In addition to the tumor characteristics, it is essential to understand all the therapies that a patient receives over time, not only for the initial treatment period but also if the cancer recurs or progresses. Capturing this subsequent therapy is critical not only for research but also to help patients understand their risk at the time of therapeutic decision making. This article serves as an introduction and foundation for a JNCI Monograph with specific articles focusing on innovative new methods and processes implemented or under development for the SEER Program. The following sections describe the need to evaluate the SEER Program and provide a summary or introduction of those key enhancements that have been or are in the process of being implemented for SEER.
Description of census-tract-level social determinants of health in cancer surveillance data.
Bhattacharya M, Cronin KA, Farrigan TL … +3 more , Kennedy AE, Yu M, Srinivasan S
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102885 · Full text
BACKGROUND: Disparities in cancer incidence, stage at diagnosis, and mortality persist by race, ethnicity, and many other social determinants, such as census-tract-level socioeconomic status (SES), poverty, and rurality....
BACKGROUND: Disparities in cancer incidence, stage at diagnosis, and mortality persist by race, ethnicity, and many other social determinants, such as census-tract-level socioeconomic status (SES), poverty, and rurality. Census-tract-level measures of these determinants are useful for analyzing trends in cancer disparities. METHODS: The purpose of this paper was to demonstrate the availability of the Surveillance, Epidemiology, and End Results Program's specialized census-tract-level dataset and provide basic descriptive cancer incidence, stage at diagnosis, and survival for 8 cancer sites, which can be screened regularly or associated with infectious agents. We present these analyses according to several census-tract-level measures, including the newly available persistent poverty as well as SES quintile, rurality, and race and ethnicity. RESULTS: Census tracts with persistent poverty and low SES had higher cancer incidence rates (except for breast and prostate cancer), higher percentages of cases diagnosed with regional or distant-stage disease, and lower survival than non-persistent-poverty and higher-SES tracts. Outcomes varied by cancer site when analyzing based on rurality as well as race and ethnicity. Analyses stratified by multiple determinants showed unique patterns of outcomes, which bear further investigation. CONCLUSIONS: This article introduces the Surveillance, Epidemiology, and End Results specialized dataset, which contains census-tract-level social determinants measures, including persistent poverty, rurality, SES quintile, and race and ethnicity. We demonstrate the capacity of these variables for use in producing trends and analyses focusing on cancer health disparities. Analyses may inform interventions and policy changes that improve cancer outcomes among populations living in disadvantaged areas, such as persistent-poverty tracts.
Real-world lessons: combining cancer registry and retail pharmacy data for oral cancer drugs.
Howlader N, Lund JL, Enewold L … +5 more , Stevens J, McNeel T, Rivera D, Mariotto A, Cronin KA
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102884 · Full text
BACKGROUND: Recent cancer care advances have introduced new oral therapies, and yet population registries lack detailed treatment data, hampering investigations into therapy uptake, adherence, and outcomes. OBJECTIVE: Th...
BACKGROUND: Recent cancer care advances have introduced new oral therapies, and yet population registries lack detailed treatment data, hampering investigations into therapy uptake, adherence, and outcomes. OBJECTIVE: This study aimed to assess the representativeness and completeness of linking Surveillance, Epidemiology, and End Results (SEER) cancer registry data with data from two major retail pharmacy chains, collectively covering a large segment of the US market. METHODS: A deterministic data linkage between 11 SEER cancer registries and retail pharmacy data (excluding mail order fills) was conducted for individuals diagnosed with selected cancers from 2013 to 2017, with follow-up through 2019. Descriptive characteristics of the linked and unlinked populations were examined. In a selected subcohort of older women (aged ≥65) with first and only primary breast cancer who had Medicare Part D claims for tamoxifen, we further validated the linkage using Medicare Part D event data as the reference standard. RESULTS: Among 758 068 eligible individuals, only 6.4% were linked to CVS/Walgreens data; the linkage percentage varied by age, sex, race, ethnicity, registry, and cancer type. Within the subcohort of 5963 older women with breast cancer and a claim for tamoxifen in Part D data, 25% were identified as tamoxifen users in retail pharmacy data. Out of these 1490 women, 749 (50.3%) had complete longitudinal tamoxifen dispensing information from retail pharmacy data. CONCLUSION: Retail pharmacy data show promise in identifying oral anticancer treatments, enhancing SEER registry efforts, but they require further validation. We propose an evaluation framework, sharing insights and potential use cases for this resource.
Machine learning and deep learning tools for the automated capture of cancer surveillance data.
Hsu E, Hanson H, Coyle L … +3 more , Stevens J, Tourassi G, Penberthy L
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102883 · Full text
The National Cancer Institute and the Department of Energy strategic partnership applies advanced computing and predictive machine learning and deep learning models to automate the capture of information from unstructure...
The National Cancer Institute and the Department of Energy strategic partnership applies advanced computing and predictive machine learning and deep learning models to automate the capture of information from unstructured clinical text for inclusion in cancer registries. Applications include extraction of key data elements from pathology reports, determination of whether a pathology or radiology report is related to cancer, extraction of relevant biomarker information, and identification of recurrence. With the growing complexity of cancer diagnosis and treatment, capturing essential information with purely manual methods is increasingly difficult. These new methods for applying advanced computational capabilities to automate data extraction represent an opportunity to close critical information gaps and create a nimble, flexible platform on which new information sources, such as genomics, can be added. This will ultimately provide a deeper understanding of the drivers of cancer and outcomes in the population and increase the timeliness of reporting. These advances will enable better understanding of how real-world patients are treated and the outcomes associated with those treatments in the context of our complex medical and social environment.
The SEER Program's longstanding commitment to making cancer resources available.
Murphy PK, Sellers ME, Bonds SH … +1 more , Scott S
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102882 · Full text
The Surveillance, Epidemiology, and End Results (SEER) Program, an authoritative source of cancer statistics in the United States, has been funded by the National Cancer Institute (NCI) since 1973. The goals of SEER incl...
The Surveillance, Epidemiology, and End Results (SEER) Program, an authoritative source of cancer statistics in the United States, has been funded by the National Cancer Institute (NCI) since 1973. The goals of SEER include measuring the cancer burden in the United States, making the results available, and supporting cancer research. These goals render products that serve as resources for different audiences, such as cancer registrars, researchers, and the public. Cancer registrars have access to a dedicated tab on the SEER website for questions, assistance with cancer coding, and training and technical resources such as SEER*Rx and SEER Data Management System (SEER*DMS). For researchers, SEER provides access to databases and software such as SEER*Stat and other linked databases such as SEER-Medicare that may offer answers to emerging issues in the field of cancer outcomes, cancer burden, health disparities, healthcare access, diagnosis, and prevention. The public can access cancer materials such as the SEER Cancer Stat Facts sheets, SEER*Explorer, and Did You Know? video series to learn more about cancer. SEER continues to update its resources with and ahead of legislation such as the Plain Writing Act and 21st Century Integrated Digital Experience Act (IDEA) to improve both clarity and user experience. Moving forward, SEER continues to promote awareness of SEER resources, remains accessible and understandable across all audiences, and standardizes how new resources are shared with these groups. The longstanding commitment to making cancer resources available is fundamental to the value of SEER, as evidenced by testimonials from members of various audience types.
History of the Surveillance, Epidemiology, and End Results (SEER) Program.
Friedman S, Negoita S
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102881 · Full text
The Surveillance, Epidemiology, and End Results (SEER) Program established in 1973 was the first laboratory for experimenting with new methods for cancer data collection and translating the data into population-based can...
The Surveillance, Epidemiology, and End Results (SEER) Program established in 1973 was the first laboratory for experimenting with new methods for cancer data collection and translating the data into population-based cancer statistics. The SEER Program staff have been instrumental in the development of the International Classification of Disease-Oncology and successfully implemented the routine collection of anatomic and prognostic cancer stage at diagnosis. Currently the program consists of 21 central registries that generate cancer statistics covering more than 48% of the US population and an additional 10 research support registries contributing to certain research projects, such as the National Childhood Cancer Registry. In parallel with the geographical expansion, the program built an architecture of methods and tools for population-based cancer statistics, with SEER*Explorer as the most recent online tool for descriptive statistics. In addition, SEER releases annual updates for a comprehensive data product line, which includes SEER*Stat databases with an annual caseload of more than 800 000 incident cases. Furthermore, the program developed a full suite of analytical applications for population-based cancer statistics that include Joinpoint (regression-based trend analysis), DevCan (risk of diagnosis and death), CanSurv (survival models), and ComPrev and PrejPrev (cancer prevalence), among others. The future of the SEER Program is closely aligned to the overall goals of the "war on cancer." The program aims to release longitudinal treatment data coupled with a comprehensive genomic characterization of cancers with a declared goal of decreasing the cancer burden and disparities across a wide spectrum of diseases and communities.
Landscape analysis of environmental data sources for linkage with SEER cancer patients database.
Tatalovich Z, Chtourou A, Zhu L … +4 more , Dellavalle C, Hanson HA, Henry KA, Penberthy L
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102880 · Full text
One of the challenges associated with understanding environmental impacts on cancer risk and outcomes is estimating potential exposures of individuals diagnosed with cancer to adverse environmental conditions over the li...
One of the challenges associated with understanding environmental impacts on cancer risk and outcomes is estimating potential exposures of individuals diagnosed with cancer to adverse environmental conditions over the life course. Historically, this has been partly due to the lack of reliable measures of cancer patients' potential environmental exposures before a cancer diagnosis. The emerging sources of cancer-related spatiotemporal environmental data and residential history information, coupled with novel technologies for data extraction and linkage, present an opportunity to integrate these data into the existing cancer surveillance data infrastructure, thereby facilitating more comprehensive assessment of cancer risk and outcomes. In this paper, we performed a landscape analysis of the available environmental data sources that could be linked to historical residential address information of cancer patients' records collected by the National Cancer Institute's Surveillance, Epidemiology, and End Results Program. The objective is to enable researchers to use these data to assess potential exposures at the time of cancer initiation through the time of diagnosis and even after diagnosis. The paper addresses the challenges associated with data collection and completeness at various spatial and temporal scales, as well as opportunities and directions for future research.
Virtual Pooled Registry-Cancer Linkage System: an improved method for ascertaining cancer diagnoses.
Deapen D, Clerkin C, Howe W … +7 more , Green D, Johnson CJ, Kohler BA, Landgren AM, Preda A, Elena J, Penberthy L
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102879 · Full text
BACKGROUND: The National Cancer Institute funds many large cohort studies that rely on self-reported cancer data requiring medical record validation. This is labor intensive, costly, and prone to underreporting or misrep...
BACKGROUND: The National Cancer Institute funds many large cohort studies that rely on self-reported cancer data requiring medical record validation. This is labor intensive, costly, and prone to underreporting or misreporting of cancer and disparity-related differential response. US population-based central cancer registries identify incident cancer within their catchment area, yielding all malignant neoplasms and benign brain and central nervous system tumors with standardized data fields. This manuscript describes the development, implementation, and features of a system to facilitate linkage between cohort studies and cancer registries and the release of cancer registry data for matched cohort participants. METHODS: The Virtual Pooled Registry-Cancer Linkage System (VPR-CLS) provides an online system to link cohorts with multiple state cancer registries by 1) securely transmitting a study file to registries, 2) providing an optimized linkage algorithm to generate preliminary match counts, and 3) providing a streamlined process and templated forms for submitting and tracking data requests for cohort participants who matched with registries. RESULTS: In 2022, the VPR-CLS launched with 45 registries, covering 95% of the US state populations and Puerto Rico. Registries have linked with 15 studies having 14 273-10.9 million participants. Except in 1 study, linkage sensitivity ranged from 87.0% to 99.9%. Numerous registries have adopted the VPR-CLS templated institutional review board-registry application (n = 39), templated data use agreement (n = 25), and central institutional review board (n = 16). CONCLUSIONS: The VPR-CLS markedly improves ascertainment of cancer outcomes and is the preferred approach for determination of outcomes from cohort studies, postmarketing surveillance, and clinical trials.
NCI SEER-Linked Virtual Tissue Repository Pilot.
Sanchez P, Van Dyke AL, Petkov VI … +18 more , Yuan Y, Bonds S, Valenzuela C, Tuan AW, Moravec R, Altekruse SF, Singhi AD, Serdy KM, Wu Y, Cress RD, Doherty JA, Mueller L, Hernandez BY, Lynch CF, Tucker TC, Wu XC, Matrisian L, Penberthy L
J Natl Cancer Inst Monogr · 2024 Aug · PMID 39102878 · Full text
BACKGROUND: The Surveillance, Epidemiology, and End Results (SEER) Program with the National Cancer Institute tested whether population-based cancer registries can serve as honest brokers to acquire tissue and data in th...
BACKGROUND: The Surveillance, Epidemiology, and End Results (SEER) Program with the National Cancer Institute tested whether population-based cancer registries can serve as honest brokers to acquire tissue and data in the SEER-Linked Virtual Tissue Repository (VTR) Pilot. METHODS: We collected formalin-fixed, paraffin-embedded tissue and clinical data from patients with pancreatic ductal adenocarcinoma (PDAC) and breast cancer (BC) for two studies comparing cancer cases with highly unusual survival (≥5 years for PDAC and ≤30 months for BC) to pair-matched controls with usual survival (≤2 years for PDAC and ≥5 years for BC). Success was defined as the ability for registries to acquire tissue and data on cancer cases with highly unusual outcomes. RESULTS: Of 98 PDAC and 103 BC matched cases eligible for tissue collection, sources of attrition for tissue collection were tissue being unavailable, control paired with failed case, second control that was not requested, tumor necrosis ≥20%, and low tumor cellularity. In total, tissue meeting the study criteria was obtained for 70 (71%) PDAC and 74 (72%) BC matched cases. For patients with tissue received, clinical data completeness ranged from 59% for CA-19-9 after treatment to >95% for margin status, whether radiation therapy and chemotherapy were administered, and comorbidities. CONCLUSIONS: The VTR Pilot demonstrated the feasibility of using SEER cancer registries as honest brokers to provide tissue and clinical data for secondary use in research. Studies using this program should oversample by 45% to 50% to obtain sufficient sample size and targeted population representation and involve subspecialty matter expert pathologists for tissue selection.
Scalable Telehealth Cancer Care: integrated healthy lifestyle program to live well after cancer treatment.
Spring B, Garcia SF, Daly E … +11 more , Jacobs M, Jayeoba M, Jordan N, Kircher S, Kocherginsky M, Mazzetta R, Pollack T, Scanlan L, Scherr C, Hitsman B, Phillips SM
J Natl Cancer Inst Monogr · 2024 Jun · PMID 38924795 · Full text
Northwestern University's Center for Scalable Telehealth Cancer Care (STELLAR) is 1 of 4 Cancer Moonshot Telehealth Research Centers of Excellence programs funded by the National Cancer Institute to establish an evidence...
Northwestern University's Center for Scalable Telehealth Cancer Care (STELLAR) is 1 of 4 Cancer Moonshot Telehealth Research Centers of Excellence programs funded by the National Cancer Institute to establish an evidence base for telehealth in cancer care. STELLAR is grounded in the Institute of Medicine's vision that quality cancer care includes not only disease treatment but also promotion of long-term health and quality of life (QOL). Cigarette smoking, insufficient physical activity, and overweight and obesity often co-occur and are associated with poorer treatment response, heightened recurrence risk, decreased longevity, diminished QOL, and increased treatment cost for many cancers. These risk behaviors are prevalent in cancer survivors, but their treatment is not routinely integrated into oncology care. STELLAR aims to foster patients' long-term health and QOL by designing, implementing, and sustaining a novel telehealth treatment program for multiple risk behaviors to be integrated into standard cancer care. Telehealth delivery is evidence-based for health behavior change treatment and is well suited to overcome access and workflow barriers that can otherwise impede treatment receipt. This paper describes STELLAR's 2-arm randomized parallel group pragmatic clinical trial comparing telehealth-delivered, coach-facilitated multiple risk behavior treatment vs self-guided usual care for the outcomes of reach, effectiveness, and cost among 3000 cancer survivors who have completed curative intent treatment. This paper also discusses several challenges encountered by the STELLAR investigative team and the adaptations developed to move the research forward.
University of Pennsylvania Telehealth Research Center of Excellence.
Wainwright JV, Aggarwal C, Beucker S … +22 more , Dougherty DW, Gabriel PE, Jacobs LA, Kalman J, Linn KA, Martella AO, Mehta SJ, Rhodes CM, Roy M, Schapira MM, Shulman LN, Steltz J, Stephens Shields AJ, Tan ASL, Thompson JC, Toneff H, Wender RC, Zeb S, Rendle KA, Vachani A, Bekelman JE, Penn TRACE
J Natl Cancer Inst Monogr · 2024 Jun · PMID 38924794 · Full text
Drawing from insights from communication science and behavioral economics, the University of Pennsylvania Telehealth Research Center of Excellence (Penn TRACE) is designing and testing telehealth strategies with the pote...
Drawing from insights from communication science and behavioral economics, the University of Pennsylvania Telehealth Research Center of Excellence (Penn TRACE) is designing and testing telehealth strategies with the potential to transform access to care, care quality, outcomes, health equity, and health-care efficiency across the cancer care continuum, with an emphasis on understanding mechanisms of action. Penn TRACE uses lung cancer care as an exemplar model for telehealth across the care continuum, from screening to treatment to survivorship. We bring together a diverse and interdisciplinary team of international experts and incorporate rapid-cycle approaches and mixed methods evaluation in all center projects. Our initiatives include a pragmatic sequential multiple assignment randomized trial to compare the effectiveness of telehealth strategies to increase shared decision-making for lung cancer screening and 2 pilot projects to test the effectiveness of telehealth to improve cancer care, identify multilevel mechanisms of action, and lay the foundation for future pragmatic trials. Penn TRACE aims to produce new fundamental knowledge and advance telehealth science in cancer care at Penn and nationally.
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