Physical Activity Among Utah Cancer Survivors: Analysis From a Population-Based Statewide Survey.

BACKGROUND: Regular physical activity improves cancer survivors' health-related quality of life and physical function. We estimated the proportion of Utah cancer survivors meeting U.S. Department of Health and Human Services guidelines for weekly physical activity (aerobic plus strength exercise) and identify sociodemographic, cancer, and health-related factors associated with meeting guidelines. METHODS: Survivors randomly sampled from Utah Cancer Registry records were surveyed from 2018 to 2022 to ascertain physical activity. We calculated the percent of survivors meeting guidelines and conducted logistic regression to assess predictors of meeting guidelines. Analyses were weighted to account for complex survey sample design and nonresponse and age adjusted. RESULTS: Among Utah cancer survivors, 20.7% (95% CI, 18.5%-23.2%) met guidelines for both aerobic activity and strength exercise. 22.4% reported no aerobic exercise in a typical week, and 59.4% reported no strength exercise. Survivors 75 or older were less likely to meet physical activity guidelines than those under 55 (adjusted odds ratio: 0.40; 95% CI, 0.25-0.65). Survivors with a bachelor's degree or higher were more likely to meet physical activity guidelines than those without a college degree. Individuals with poorer overall health were less likely to report sufficient physical activity. Individuals treated with both chemotherapy and radiation had decreased odds of meeting guidelines compared to no treatment (adjusted odds ratio: 0.54; 95% CI, 0.29-0.99). CONCLUSIONS: Most Utah cancer survivors, and particularly those who received multiple modes of adjuvant treatment, are not participating in sufficient physical activity to improve longevity and quality of life after cancer.

Material financial hardship and insurance-related experiences among Utah's rural and urban cancer survivors.

PURPOSE: Describe material financial hardship (e.g., using savings, credit card debt), insurance, and access to care experienced by Utah cancer survivors; investigate urban-rural differences in financial hardship. METHODS: Cancer survivors were surveyed from 2018 to 2021 about their experiences with financial hardship, access to healthcare, and job lock (insurance preventing employment changes). Weighed percentage responses, univariable and multivariable logistic regression models for these outcomes compared differences in survivors living in rural and urban areas based on Rural-Urban Commuting Area Codes. RESULTS: The N = 1793 participants were predominantly Non-Hispanic White, female, and 65 or older at time of survey. More urban than rural survivors had a college degree (39.8% vs. 31.0%, p = 0.04). Overall, 35% of survivors experienced ≥ 1 financial hardship. In adjusted analyses, no differences were observed between urban and rural survivors for: material financial hardship, the overall amount of hardship reported, insurance status at survey, access to healthcare, or job lock. Hispanic rural survivors were less likely to report financial hardship than Hispanic urban survivors (odds ratio (OR) = 0.24, 95%CI = 0.08-0.73)). Rural survivors who received chemo/immune therapy as their only treatment were more likely to report at least one instance of financial hardship than urban survivors (OR = 2.72, 95%CI = 1.08-6.86). CONCLUSIONS: The relationship between rurality and financial hardship among survivors may be most burdensome for patients whose treatments require travel or specialty medication access. IMPLICATIONS FOR CANCER SURVIVORS: The impact of living rurally on financial difficulties after cancer diagnoses is complex. Features of rurality that may alter financial difficulty after a cancer diagnosis may vary geographically and instead of considering rurality as a stand-alone factor, these features should be investigated independently.

Accuracy of patient race and ethnicity data in a central cancer registry.

PURPOSE: Race and Hispanic ethnicity data can be challenging for central cancer registries to collect. We evaluated the accuracy of the race and Hispanic ethnicity variables collected by the Utah Cancer Registry compared to self-report. METHODS: Participants were 3,162 cancer survivors who completed questionnaires administered in 2015-2022 by the Utah Cancer Registry. Each survey included separate questions collecting race and Hispanic ethnicity, respectively. Registry-collected race and Hispanic ethnicity were compared to self-reported values for the same individuals. We calculated sensitivity and specificity for each race category and Hispanic ethnicity separately. RESULTS: Survey participants included 323 (10.2%) survivors identifying as Hispanic, a lower proportion Hispanic than the 12.1% in the registry Hispanic variable (sensitivity 88.2%, specificity 96.5%). For race, 43 participants (1.4%) self-identified as American Indian or Alaska Native (AIAN), 32 (1.0%) as Asian, 23 (0.7%) as Black or African American, 16 (0.5%) Pacific Islander (PI), and 2994 (94.7%) as White. The registry race variable classified a smaller proportion of survivors as members of each of these race groups except White. Sensitivity for classification of race as AIAN was 9.3%, Asian 40.6%, Black 60.9%, PI 25.0%, and specificity for each of these groups was > 99%. Sensitivity and specificity for White were 98.8% and 47.4%. CONCLUSION: Cancer registry race and Hispanic ethnicity data often did not match the individual's self-identification. Of particular concern is the high proportion of AIAN individuals whose race is misclassified. Continued attention should be directed to the accurate capture of race and ethnicity data by hospitals.

Cancer survivorship experiences in Utah: an evaluation assessing indicators of survivors' quality of life, health behaviors, and access to health services.

PURPOSE: The 2016-2020 Utah Comprehensive Cancer Prevention and Control Plan prioritized strategies to address cancer survivorship experiences. In this paper we present estimates for nine indicators evaluating these priorities, trends over time, and assess disparities in survivorship experiences across demographic subgroups. METHODS: We surveyed a representative sample of Utah cancer survivors diagnosed between 2012 and 2019 with any reportable cancer diagnosis. We calculated weighted percentages and 95% confidence intervals (CI) for each indicator. We assessed change over time using a test for trend across survey years in a logistic regression model and used Rao-Scott F-adjusted chi-square tests to test the association between demographic characteristics and each survivorship indicator. RESULTS: Most of the 1,793 respondents (93.5%) reported their pain was under control, 85.7% rated their overall health as good, very good, or excellent, but 46.5% experienced physical, mental, or emotional limitations. Only 1.7% of survivors aged 75 or older were current smokers, compared to 5.8% of 65-74-year-olds and 7.9% of survivors aged 55-74 (p < 0.006). No regular physical activity was reported by 20.6% and varied by survivor age and education level. The proportion who received a survivorship care plan increased from 34.6% in 2018 to 43.0% in 2021 (p = 0.025). However, survivors under age 55 were significantly less likely to receive a care plan than older survivors. CONCLUSION: This representative survey of cancer survivors fills a gap in understanding of the cancer survivorship experience in Utah. Results can be used to evaluate and plan additional interventions to improve survivorship quality of life.

Cancer survivors' financial hardship and their caregivers' employment: results from a statewide survey.

PURPOSE: Many caregivers take paid and/or unpaid time off work, change from full-time to part-time, or leave the workforce. We hypothesized that cancer survivor-reported material hardship (e.g., loans, bankruptcy), behavioral hardship (e.g., skipping care/medication due to cost), and job lock (i.e., staying at a job for fear of losing insurance) would be associated with caregiver employment changes. METHODS: Adult cancer survivors (N = 627) were surveyed through the Utah Cancer Registry in 2018-2019, and reported whether their caregiver had changed employment because of their cancer (yes, no). Material hardship was measured by 9 items which we categorized by the number of instances reported (0, 1-2, and ≥ 3). Two items represented both behavioral hardship (not seeing doctor/did not take medication because of cost) and survivor/spouse job lock. Odds ratios (OR) were estimated using survey-weighted logistic regression to examine the association of caregiver employment changes with material and behavioral hardship and job lock, adjusting for cancer and sociodemographic factors. RESULTS: There were 183 (29.2%) survivors reporting their caregiver had an employment change. Survivors with ≥ 3 material hardships (OR = 3.13, 95%CI 1.68-5.83), who skipped doctor appointments (OR = 2.88, 95%CI 1.42-5.83), and reported job lock (OR = 2.05, 95%CI 1.24-3.39) and spousal job lock (OR = 2.19, 95%CI 1.17-4.11) had higher odds of caregiver employment changes than those without these hardships. CONCLUSIONS: Caregiver employment changes that occur because of a cancer diagnosis are indicative of financial hardship. IMPLICATIONS FOR CANCER SURVIVORS: Engaging community and hospital support for maintenance of stable caregiver employment and insurance coverage during cancer may lessen survivors' financial hardship.

Adherence to Guideline-Recommended cancer screening among Utah cancer survivors.

BACKGROUND: Adherence to cancer screening is important for cancer survivors because they are at high risk of subsequent cancer diagnoses or recurrence. We assessed adherence to breast, cervical, and colorectal cancer-(CRC)-screening guidelines and evaluated demographic disparities among a population-based sample of survivors. METHODS: A representative sample of Utah survivors diagnosed from 2012-2018 with any reportable invasive cancer was selected from central cancer registry records for a survey about survivorship needs. We estimated the proportion of eligible survivors adhering to U.S. Preventive Services Task Force screening guidelines and calculated risk ratios and 95% confidence intervals. Analyses were age-adjusted and weighted to account for sample design and nonresponse. RESULTS: And 1421 survivors completed the survey (57.2% response rate). Screening adherence was 74.4% for breast, 69.4% for cervical, and 79.7% for CRC. Rural residents were more likely to adhere to breast cancer screening than urban residents (86.1% vs. 72.7%; adjusted RR = 1.19, CI = 1.05, 1.36). Higher educational attainment was associated with increased adherence to cervical and colorectal cancer screening. Younger age was associated with greater adherence to cervical cancer screening (p = 0.006) but lower adherence to CRC screening (p = 0.003). CRC screening adherence was lower among the uninsured and those without a primary care provider (45.6%) compared to those with a regular provider (83.0%; adjusted RR = 0.57, CI = 0.42, 0.79). CONCLUSIONS: Surveys based on samples from central cancer registries can provide population estimates to inform cancer control. Findings demonstrate work is needed to ensure all Utah cancer survivors obtain recommended cancer screenings. Efforts should focus particularly on increasing uptake of breast and cervical cancer screening and reducing demographic disparities in CRC screening. PRECIS: Despite high risk for subsequent cancer diagnosis, Utah cancer survivors are not all obtaining recommended breast, cervical, and colorectal cancer screenings. This presents a significant healthcare gap.

Impact of rurality on melanoma diagnosis in Utah.

AIM: To analyze trends in Utah melanoma diagnosis and study the impact of rurality. PATIENTS & METHODS: State-wide melanoma incidence was calculated using Surveillance, Epidemiology, and End Results data (2005-2013). A subset of 5199 patients treated in an integrated healthcare system was further stratified for urban or rural residence. RESULTS: Early-stage tumors accounted for most of the increase in melanoma incidence over time. Age-adjusted melanoma incidence rate was higher in rural counties (46.7 vs 39.4). Anatomic site and stage did not differ between rural and urban patients. Rural patients were more commonly diagnosed by a local primary care provider. CONCLUSION: Rurality had an impact on melanoma diagnosis in the specialty and location of the diagnosing provider.

Longitudinal Changes in Prorenin and Renin in the Chronic Renal Insufficiency Cohort.

INTRODUCTION: Prorenin, a precursor of renin, and renin play an important role in regulation of the renin-angiotensin system. More recently, receptor-bound prorenin has been shown to activate intracellular signaling pathways that mediate fibrosis, independent of angiotensin II. Prorenin and renin may thus be of physiologic significance in CKD, but their plasma concentrations have not been well characterized in CKD. METHODS: We evaluated distribution and longitudinal changes of prorenin and renin concentrations in the plasma samples collected at follow-up years 1, 2, 3, and 5 of the Chronic Renal Insufficiency Cohort (CRIC) study, an ongoing longitudinal observational study of 3,939 adults with CKD. Descriptive statistics and multivariable regression of log-transformed values were used to describe cross-sectional and longitudinal variation and associations with participant characteristics. RESULTS: A total of 3,361 CRIC participants had plasma available for analysis at year 1. The mean age (±standard deviation, SD) was 59 ± 11 years, and the mean estimated glomerular filtration rate (eGFR, ± SD) was 43 ± 17 mL/min per 1.73 m2. Median (interquartile range) values of plasma prorenin and renin at study entry were 4.4 (2.1, 8.8) ng/mL and 2.0 (0.8, 5.9) ng/dL, respectively. Prorenin and renin were positively correlated (Spearman correlation 0.51, p < 0.001) with each other. Women and non-Hispanic blacks had lower prorenin and renin values at year 1. Diabetes, lower eGFR, and use of angiotensin-converting enzyme inhibitors, angiotensin receptor blockers, statins, and diuretics were associated with higher levels. Prorenin and renin decreased by a mean of 2 and 5% per year, respectively. Non-Hispanic black race and eGFR <30 mL/min/1.73 m2 at year 1 predicted a steeper decrease in prorenin and renin over time. In addition, each increase in urinary sodium excretion by 2 SDs at year 1 increased prorenin and renin levels by 4 and 5% per year, respectively. DISCUSSION/CONCLUSIONS: The cross-sectional clinical factors associated with prorenin and renin values were similar. Overall, both plasma prorenin and renin concentrations decreased over the years, particularly in those with severe CKD at study entry.

Pathology Laboratory Policies and Procedures for Releasing Diagnostic Tissue for Cancer Research.

CONTEXT.­: The Surveillance, Epidemiology, and End Results (SEER) cancer registry program is currently evaluating the use of archival, diagnostic, formalin-fixed, paraffin-embedded (FFPE) tissue obtained through SEER cancer registries, functioning as honest brokers for deidentified tissue and associated data. To determine the feasibility of this potential program, laboratory policies for sharing tissue for research needed to be assessed. OBJECTIVE.­: To understand the willingness of pathology laboratories to share archival diagnostic tissue for cancer research and related policies. DESIGN.­: Seven SEER registries administered a 27-item questionnaire to pathology laboratories within their respective registry catchment areas. Only laboratories that processed diagnostic FFPE specimens and completed the questionnaire were included in the analysis. RESULTS.­: Of the 153 responding laboratories, 127 (83%) responded that they process FFPE specimens. Most (n = 88; 69%) were willing to share tissue specimens for research, which was not associated with the number of blocks processed per year by the laboratories. Most laboratories retained the specimens for at least 10 years. Institutional regulatory policies on sharing deidentified tissue varied considerably, ranging from requiring a full Institutional Review Board review to considering such use exempt from Institutional Review Board review, and 43% (55 of 127) of the laboratories did not know their terms for sharing tissue for research. CONCLUSIONS.­: This project indicated a general willingness of pathology laboratories to participate in research by sharing FFPE tissue. Given the variability of research policies across laboratories, it is critical for each SEER registry to work with laboratories in their catchment area to understand such policies and state legislation regulating tissue retention and guardianship.

Improving Central Cancer Registry Surveillance through Interstate Data Exchange of Electronic Pathology Reports.

When a cancer case is diagnosed or treated in one US state, but the patient resides in another, the case report abstract is shared with the central cancer registry in the state of residence through interstate data exchange. However, the records shared may not include pathology reports. Cases diagnosed in another state that would be ascertained only from pathology reports may thus be missed. Utah Cancer Registry received many electronic pathology (e-path) records for nonresident cases that were not being shared. In 2019, Utah Cancer Registry implemented workflow changes and created a novel data extract process to share e-path records in a North American Association of Central Cancer Registries (NAACCR) HL7 format. Utah Cancer Registry shared e-path records for an estimated 2,773 cases with other states for the diagnosis year 2018. Of these cases, both an e-path record and NAACCR-format abstract were shared for 1,709 (61.6%), whereas e-path record only was shared for 1,064 (38.4%). The largest number of e-path records went to 2 adjacent states: Idaho (n = 1,084) and Wyoming (n = 621). Receiving registries reported success importing the files. The e-path data stream resulted in ascertainment of 96 new cases for Idaho and 89 for Wyoming for diagnosis year 2018. Whereas most shared e-path records represented cases already known to the receiving registry, registry staff provided feedback that it was beneficial to obtain the additional documentation. Linking and reviewing the shared e-path records did represent additional workload. Central cancer registries can adopt this process for sharing e-path records via interstate data exchange to support complete case ascertainment in collaborating states.

21-gene recurrence score testing utilization among older women from different races: A population-based study.

OBJECTIVES: The influence of older age at diagnosis in combination with race/ethnicity on utilization and results of the 21-gene recurrence score (RS) assay for breast cancer (BC) patients is not fully understood. Our objectives were to evaluate the utilization of RS among older women with BC, the likelihood of a high-risk RS, and factors associated with breast cancer-specific mortality (BCSM) among older patients across different races. MATERIALS AND METHODS: We utilized the Surveillance, Epidemiology, and Results (SEER) database with linked RS results to evaluate women with estrogen receptor-positive BC diagnosed 2004-2015. Multivariable logistic regression was used to describe the differences in utilization of RS testing and the association of high-risk RS according to patient characteristics. The Cox proportional hazards model was used to analyze factors associated with BCSM. RESULTS: We found that 20.4% (109,244/536,555) of all women ≥18 and 14.3% (33,584/235,171) of women ≥65 underwent RS testing. Non-whites had lower odds of RS testing at younger ages whereas among women ≥65 there was no significant difference. After taking into account stage and grade, being ≥65 reduced the odds of high-risk RS in all races except American Indian/Alaskan Native. Age ≥ 65 was independently associated with increased hazard BCSM. Among women ≥65 with high-risk RS, chemotherapy was associated with lower hazard of BCSM in all races. CONCLUSIONS: Older women are less likely to be tested for RS, but also less likely to have high-risk RS. Older women with high-risk RS, when given chemotherapy have reduced BCSM across all races.

Utilizing SEER Cancer Registries for Population-Based Cancer Survivor Epidemiologic Studies: A Feasibility Study.

BACKGROUND: While the primary role of central cancer registries in the United States is to provide vital information needed for cancer surveillance and control, these registries can also be leveraged for population-based epidemiologic studies of cancer survivors. This study was undertaken to assess the feasibility of using the NCI's Surveillance, Epidemiology, and End Results (SEER) Program registries to rapidly identify, recruit, and enroll individuals for survivor research studies and to assess their willingness to engage in a variety of research activities. METHODS: In 2016 and 2017, six SEER registries recruited both recently diagnosed and longer-term survivors with early age-onset multiple myeloma or colorectal, breast, prostate, or ovarian cancer. Potential participants were asked to complete a survey, providing data on demographics, health, and their willingness to participate in various aspects of research studies. RESULTS: Response rates across the registries ranged from 24.9% to 46.9%, with sample sizes of 115 to 239 enrolled by each registry over a 12- to 18-month period. Among the 992 total respondents, 90% answered that they would be willing to fill out a survey for a future research study, 91% reported that they would donate a biospecimen of some type, and approximately 82% reported that they would consent to have their medical records accessed for research. CONCLUSIONS: This study demonstrated the feasibility of leveraging SEER registries to recruit a geographically and racially diverse group of cancer survivors. IMPACT: Central cancer registries are a source of high-quality data that can be utilized to conduct population-based cancer survivor studies.

Family Study Designs Informed by Tumor Heterogeneity and Multi-Cancer Pleiotropies: The Power of the Utah Population Database.

BACKGROUND: Previously, family-based designs and high-risk pedigrees have illustrated value for the discovery of high- and intermediate-risk germline breast cancer susceptibility genes. However, genetic heterogeneity is a major obstacle hindering progress. New strategies and analytic approaches will be necessary to make further advances. One opportunity with the potential to address heterogeneity via improved characterization of disease is the growing availability of multisource databases. Specific to advances involving family-based designs are resources that include family structure, such as the Utah Population Database (UPDB). To illustrate the broad utility and potential power of multisource databases, we describe two different novel family-based approaches to reduce heterogeneity in the UPDB. METHODS: Our first approach focuses on using pedigree-informed breast tumor phenotypes in gene mapping. Our second approach focuses on the identification of families with similar pleiotropies. We use a novel network-inspired clustering technique to explore multi-cancer signatures for high-risk breast cancer families. RESULTS: Our first approach identifies a genome-wide significant breast cancer locus at 2q13 [P = 1.6 × 10-8, logarithm of the odds (LOD) equivalent 6.64]. In the region, IL1A and IL1B are of particular interest, key cytokine genes involved in inflammation. Our second approach identifies five multi-cancer risk patterns. These clusters include expected coaggregations (such as breast cancer with prostate cancer, ovarian cancer, and melanoma), and also identify novel patterns, including coaggregation with uterine, thyroid, and bladder cancers. CONCLUSIONS: Our results suggest pedigree-informed tumor phenotypes can map genes for breast cancer, and that various different cancer pleiotropies exist for high-risk breast cancer pedigrees. IMPACT: Both methods illustrate the potential for decreasing etiologic heterogeneity that large, population-based multisource databases can provide.See all articles in this CEBP Focus section, "Modernizing Population Science."

The feasibility of web surveys for obtaining patient-reported outcomes from cancer survivors: a randomized experiment comparing survey modes and brochure enclosures.

BACKGROUND: Central cancer registries are often used to survey population-based samples of cancer survivors. These surveys are typically administered via paper or telephone. In most populations, web surveys obtain much lower response rates than paper surveys. This study assessed the feasibility of web surveys for collecting patient-reported outcomes via a central cancer registry. METHODS: Potential participants were sampled from Utah Cancer Registry records. Sample members were randomly assigned to receive a web or paper survey, and then randomized to either receive or not receive an informative brochure describing the cancer registry. We calculated adjusted risk ratios with 95% confidence intervals to compare response likelihood and the demographic profile of respondents across study arms. RESULTS: The web survey response rate (43.2%) was lower than the paper survey (50.4%), but this difference was not statistically significant (adjusted risk ratio = 0.88, 95% confidence interval = 0.72, 1.07). The brochure also did not significantly influence the proportion responding (adjusted risk ratio = 1.03, 95% confidence interval = 0.85, 1.25). There were few differences in the demographic profiles of respondents across the survey modes. Older age increased likelihood of response to a paper questionnaire but not a web questionnaire. CONCLUSIONS: Web surveys of cancer survivors are feasible without significantly influencing response rates, but providing a paper response option may be advisable particularly when surveying older individuals. Further examination of the varying effects of brochure enclosures across different survey modes is warranted.

Feasibility of Capturing Cancer Treatment Data in the Utah All-Payer Claims Database.

PURPOSE: Incompleteness of treatment data is a recognized limitation of cancer registry data. An all-payer claims database (APCD) is a tool that states use to capture health care information across systems and payer. We linked the Utah Cancer Registry (UCR) records to Utah's statewide APCD and evaluated how this linkage led to improvements in the capture of cancer treatment information. METHODS: We linked cancers diagnosed and reported to the UCR with Utah APCD claims for the calendar years 2013 and 2014 using LinkPlus Software. For patients with breast or colorectal cancers, manual abstraction was completed to provide a gold-standard comparison for the treatment data obtained from the claims. RESULTS: Among 10,759 reportable cancer occurrences linked to the APCD, the claims identified additional patients with cancer who received therapies that had been unknown to the registry, increasing the proportion treated with chemotherapy from 23.7% to 27.6%, hormone therapy from 14.1% to 18.8%, immunotherapy from 4.3% to 13.2%, and radiation therapy from 24.9% to 27.5%. The APCD increased the sensitivity of treatment variables compared with the abstraction gold standard. Notably, sensitivity of hormonal therapy for breast cancer increased from 78.6% to 95.2% when augmented with APCD claims data. However, the APCD alone did not achieve as high specificity for treatment data as did the data collected through traditional registry methods. CONCLUSIONS: This is the first study, to our knowledge, showing that linking cancer registry data with a statewide claims database that covers multiple insurance companies improves cancer treatment data collection. Linking of cancer registry and APCD data can improve comprehensiveness of cancer registry treatment data.

Population prevalence of individuals meeting criteria for hereditary breast and ovarian cancer testing.

BACKGROUND: Personal cancer diagnosis and family cancer history factor into which individuals should undergo genetic testing for hereditary breast and ovarian cancer (HBOC) syndrome. Family history is often determined in the research setting through kindreds with disease clusters, or clinically from self-report. The population prevalence of individuals with diagnostic characteristics and/or family cancer history meeting criteria for HBOC testing is unknown. METHODS: Utilizing Surveillance, Epidemiology, and End Results (SEER) cancer registry data and a research resource linking registry records to genealogies, the Utah Population Database, the population-based prevalence of diagnostic and family history characteristics meeting National Comprehensive Cancer Network (NCCN) criteria for HBOC testing was objectively assessed. RESULTS: Among Utah residents with an incident breast cancer diagnosis 2010-2015 and evaluable for family history, 21.6% met criteria for testing based on diagnostic characteristics, but the proportion increased to 62.9% when family history was evaluated. The proportion of cases meeting testing criteria at diagnosis was 94% for ovarian cancer, 23% for prostate cancer, and 51.1% for pancreatic cancer. Among an unaffected Utah population of approximately 1.7 million evaluable for family history, 197,601 or 11.6% met testing criteria based on family history. CONCLUSIONS: This study quantifies the population-based prevalence of HBOC criteria using objectively determined genealogy and cancer incidence data. Sporadic breast cancer likely represents a portion of the high prevalence of family cancer history seen in this study. These results underline the importance of establishing presence of a deleterious mutation in an affected family member, per NCCN guidelines, before testing unaffected relatives.

Linkage between Utah All Payers Claims Database and Central Cancer Registry.

OBJECTIVE: To evaluate the linkage of claims from the Utah All Payers Claims Database (APCD) and Utah Cancer Registry (UCR). DATA SOURCES: Secondary data from 2013 and 2014 Utah APCD and 2013 UCR cases. STUDY DESIGN: This is a descriptive analysis of the quality of linkage between APCD claims data and cancer registry cases. DATA COLLECTION/EXTRACTION METHODS: We used the LinkPlus software to link Utah APCD and UCR data. PRINCIPAL FINDINGS: We were able to link 82.4 percent (9441/11 453) of the UCR reportable cancer cases with APCD claims. Of those linked, 66 percent were perfect matches. CONCLUSIONS: The quality of identifiers is high, evidence that claims data can potentially supplement cancer registry data for use in research.

Predictors of Response Outcomes for Research Recruitment Through a Central Cancer Registry: Evidence From 17 Recruitment Efforts for Population-Based Studies.

When recruiting research participants through central cancer registries, high response fractions help ensure population-based representation. We conducted multivariable mixed-effects logistic regression to identify case and study characteristics associated with making contact with and obtaining cooperation of Utah cancer cases using data from 17 unique recruitment efforts undertaken by the Utah Cancer Registry (2007-2016) on behalf of the following studies: A Population-Based Childhood Cancer Survivors Cohort Study in Utah, Comparative Effectiveness Analysis of Surgery and Radiation for Prostate Cancer (CEASAR Study), Costs and Benefits of Follow-up Care for Adolescent and Young Adult Cancers, Study of Exome Sequencing for Head and Neck Cancer Susceptibility Genes, Genetic Epidemiology of Chronic Lymphocytic Leukemia, Impact of Remote Familial Colorectal Cancer Risk Assessment and Counseling (Family CARE Project), Massively Parallel Sequencing for Familial Colon Cancer Genes, Medullary Thyroid Carcinoma (MTC) Surveillance Study, Osteosarcoma Surveillance Study, Prostate Cancer Outcomes Study, Risk Education and Assessment for Cancer Heredity Project (REACH Project), Study of Shared Genomic Segment Analysis and Tumor Subtyping in High-Risk Breast-Cancer Gene Pedigrees, Study of Shared Genomic Segment Analysis for Localizing Multiple Myeloma Genes. Characteristics associated with lower odds of contact included Hispanic ethnicity (odds ratio (OR) = 0.34, 95% confidence interval (CI): 0.27, 0.41), nonwhite race (OR = 0.46, 95% CI: 0.35, 0.60), and younger age at contact. Years since diagnosis was inversely associated with making contact. Nonwhite race and age ≥60 years had lower odds of cooperation. Study features with lower odds of cooperation included longitudinal design (OR = 0.50, 95% CI: 0.41, 0.61) and study brochures (OR = 0.70, 95% CI: 0.54, 0.90). Increased odds of cooperation were associated with including a questionnaire (OR = 3.19, 95% CI: 1.54, 6.59), postage stamps (OR = 1.60, 95% CI: 1.21, 2.12), and incentives (OR = 1.62, 95% CI: 1.02, 2.57). Among cases not responding after the first contact, odds of eventual response were lower when >10 days elapsed before subsequent contact (OR = 0.71, 95% CI: 0.59, 0.85). Obtaining high response is challenging, but study features identified in this analysis support better results when recruiting through central cancer registries.

Differences in molecular features of triple-negative breast cancers based on the age at diagnosis.

BACKGROUND: Although the proportion of triple-negative breast cancers (TNBCs) diagnosed among older women is low, the number of TNBC cases is substantial because of the high incidence of breast cancer after the age of 65 years. The molecular features of TNBC in this age group have not been well described. METHODS: This study examined a population-based cohort of women with stage I to III TNBC diagnosed between the ages of 25 and 91 years with the PAM50 gene expression subtyping assay. The concordance between the TNBC classification by immunohistochemistry and the gene expression classification by PAM50, the expression of individual genes, and 5-year recurrence and breast cancer mortality in older women (≥65 years old) and younger women (<50 years old) was assessed. RESULTS: The molecular subtype distribution in TNBC was significantly different according to the age at diagnosis. TNBC was more likely to be classified as basal-like in women younger than 50 years (sensitivity, 0.91; 95% confidence interval, 0.77-0.97) than women 65 years old or older (sensitivity, 0.72; 95% confidence interval, 0.48-0.87); 35% of clinical TNBC cases in the latter group were the human epidermal growth factor receptor 2 (HER2)-enriched subtype by molecular classification. Older women with TNBC also had significantly higher expression of ERBB2 and lower expression of all 10 proliferation-associated genes tested (P < .01). The risk of breast cancer death within 5 years was significantly higher in women with TNBC in comparison with women with hormone receptor-positive cancers in all age groups. CONCLUSIONS: This study revealed differences in molecular subtypes among clinical TNBC cases based on patient age. A potentially targetable HER2-enriched group raises the possible need for intrinsic subtyping in older women with TNBC.