Population-based evaluation of disparities in stomach cancer by nativity among Asian and Hispanic populations in California, 2011-2015.

BACKGROUND: Stomach cancer incidence presents significant racial/ethnic disparities among racial/ethnic minority groups in the United States, particularly among Asian and Hispanic immigrant populations. However, population-based evaluation of disparities by nativity has been scarce because of the lack of nativity-specific population denominators, especially for disaggregated Asian subgroups. Population-based stomach cancer incidence and tumor characteristics by detailed race/ethnicity and nativity were examined. METHODS: Annual age-adjusted incidence rates were calculated by race/ethnicity, sex, and nativity and tumor characteristics, such as stage and anatomic subsite, were evaluated using the 2011-2015 California Cancer Registry data. For Hispanic and Asian populations, nativity-specific population counts were estimated using the US Census and the American Community Survey Public Use Microdata Sample data. RESULTS: During 2011-2015 in California, 14,198 patients were diagnosed with stomach cancer. Annual age-adjusted incidence rates were higher among foreign-born individuals than their US-born counterparts. The difference was modest among Hispanics (∼1.3-fold) but larger (∼2- to 3-fold) among Chinese, Japanese, and Korean Americans. The highest incidence was observed for foreign-born Korean and Japanese Americans (33 and 33 per 100,000 for men; 15 and 12 per 100,000 for women, respectively). The proportion of localized stage disease was highest among foreign-born Korean Americans (44%); a similar proportion was observed among US-born Korean Americans, although numbers were limited. For other Asians and Hispanics, the localized stage proportion was generally lower among foreign-born than US-born individuals and lowest among foreign-born Japanese Americans (23%). CONCLUSIONS: Nativity-specific investigation with disaggregated racial/ethnic groups identified substantial stomach cancer disparities among foreign-born immigrant populations.

An Approach to the Primary and Secondary Prevention of Gastric Cancer in the United States.

BACKGROUND & AIMS: Gastric cancer (GC) remains a leading cause of mortality among certain racial, ethnic, and immigrant groups in the United States (US). The majority of GCs are diagnosed at advanced stages, and overall survival remains poor. There exist no structured national strategies for GC prevention in the US. METHODS: On March 5-6, 2020 a summit of researchers, policy makers, public funders, and advocacy leaders was convened at Stanford University to address this critical healthcare disparity. After this summit, a writing group was formed to critically evaluate the effectiveness, potential benefits, and potential harms of methods of primary and secondary prevention through structured literature review. This article represents a consensus statement prepared by the writing group. RESULTS: The burden of GC is highly inequitably distributed in the US and disproportionately falls on Asian, African American, Hispanic, and American Indian/Alaskan Native populations. In randomized controlled trials, strategies of Helicobacter pylori testing and treatment have been demonstrated to reduce GC-specific mortality. In well-conducted observational and ecologic studies, strategies of endoscopic screening have been associated with reduced GC-specific mortality. Notably however, all randomized controlled trial data (for primary prevention) and the majority of observational data (for secondary prevention) are derived from non-US sources. CONCLUSIONS: There exist substantial, high-quality data supporting GC prevention derived from international studies. There is an urgent need for cancer prevention trials focused on high-risk immigrant and minority populations in the US. The authors offer recommendations on how strategies of primary and secondary prevention can be applied to the heterogeneous US population.

Nonmalignant meningioma and vestibular schwannoma incidence trends in the United States, 2004-2017.

BACKGROUND: Given concerns about risks associated with the growing use of mobile phones over recent decades, the authors analyzed temporal trends in incidence rates of nonmalignant meningioma and vestibular schwannoma in the United States. METHODS: The incidence of nonmalignant meningioma and vestibular schwannoma among adults in the Surveillance, Epidemiology, and End Results 18 registries during 2004 through 2017 was evaluated according to the method of diagnosis: microscopically (MC) or radiographically confirmed (RGC). Annual percent changes (APCs) and 95% CIs were estimated using log-linear models. RESULTS: Overall meningioma rates (n = 108,043) increased significantly from 2004 to 2009 (APC, 5.4%; 95% CI, 4.4%-6.4%) but subsequently rose at a slower pace through 2017 (APC, 1.0%; 95% CI, 0.6%-1.5%). Rates for MC meningiomas changed little from 2004 to 2017 (APC, -0.3%; 95% CI, -0.7%, 0.1%) but rose rapidly for RGC meningiomas until 2009 (APC, 9.5%; 95% CI, 7.8%-11.1%) and rose more modestly thereafter (APC, 2.3%; 95% CI, 1.5%-3.0%). Overall vestibular schwannoma rates (n = 17,475) were stable (APC, 0.4%; 95% CI, -0.2%, 1.0%), but MC vestibular schwannoma rates decreased (APC, -1.9%; 95% CI, -2.7%, -1.1%), whereas RGC vestibular schwannoma rates rose (2006-2017: APC, 1.7%; 95% CI, 0.5%-3.0%). For each tumor, the trends by diagnostic method were similar for each sex and each racial/ethnic group, but RGC diagnosis was more likely in older patients and for smaller tumors. Meningioma trends and the proportion of RGC diagnoses varied notably by registry. CONCLUSIONS: Overall trends obscured differences by diagnostic method in this first large, detailed assessment, but the recent stable rates argue against an association with mobile phone use. Variation among registries requires evaluation to improve the registration of these nonmalignant tumors. LAY SUMMARY: The etiology of most benign meningiomas and vestibular schwannomas is poorly understood, but concerns have been raised about whether mobile phone use contributes to risk of developing these tumors. Descriptive studies examining temporal trends could provide insight; however, globally, few registries collect these nonmalignant cases. In the United States, reporting benign meningiomas and vestibular schwannomas became required by law in 2004. This was the first large, systematic study to quantify and characterize incidence trends for meningioma and vestibular schwannoma according to whether the tumors were diagnosed microscopically or only radiographically. Differential trends across registries and by diagnostic method suggest that caution should be used when interpreting the patterns.

Immigration history, lifestyle characteristics, and breast density in the Vietnamese American Women's Health Study: a cross-sectional analysis.

PURPOSE: Breast density is an important risk factor for breast cancer and varies substantially across racial-ethnic groups. However, determinants of breast density in Vietnamese immigrants in the United States (US) have not been studied. We investigated whether reproductive factors, immigration history, and other demographic and lifestyle factors were associated with breast density in Vietnamese Americans. METHODS: We collected information on demographics, immigration history, and other lifestyle factors and mammogram reports from a convenience sample of 380 Vietnamese American women in California aged 40 to 70 years. Breast Imaging Reporting and Data System (BI-RADS) breast density was abstracted from mammogram reports. Multivariable logistic regression was used to investigate the association between lifestyle factors and having dense breasts (BI-RADS 3 or 4). RESULTS: All participants were born in Viet Nam and 82% had lived in the US for 10 years or longer. Younger age, lower body mass index, nulliparity/lower number of deliveries, and longer US residence (or younger age at migration) were associated with having dense breasts. Compared to women who migrated at age 40 or later, the odds ratios and 95% confidence intervals for having dense breasts among women who migrated between the ages of 30 and 39 and before age 30 were 1.72 (0.96-3.07) and 2.48 (1.43-4.32), respectively. CONCLUSIONS: Longer US residence and younger age at migration were associated with greater breast density in Vietnamese American women. Identifying modifiable mediating factors to reduce lifestyle changes that adversely impact breast density in this traditionally low-risk population for breast cancer is warranted.

Workshop summary: Potential usefulness and feasibility of a US National Mesothelioma Registry.

The burden and prognosis of malignant mesothelioma in the United States have remained largely unchanged for decades, with approximately 3200 new cases and 2400 deaths reported annually. To address care and research gaps contributing to poor outcomes, in March of 2019 the Mesothelioma Applied Research Foundation convened a workshop on the potential usefulness and feasibility of a national mesothelioma registry. The workshop included formal presentations by subject matter experts and a moderated group discussion. Workshop participants identified top priorities for a registry to be (a) connecting patients with high-quality care and clinical trials soon after diagnosis, and (b) making useful data and biospecimens available to researchers in a timely manner. Existing databases that capture mesothelioma cases are limited by factors such as delays in reporting, deidentification, and lack of exposure information critical to understanding as yet unrecognized causes of disease. National disease registries for amyotrophic lateral sclerosis (ALS) in the United States and for mesothelioma in other countries, provide examples of how a registry could be structured to meet the needs of patients and the scientific community. Small-scale pilot initiatives should be undertaken to validate methods for rapid case identification, develop procedures to facilitate patient access to guidelines-based standard care and investigational therapies, and explore approaches to data sharing with researchers. Ultimately, federal coordination and funding will be critical to the success of a National Mesothelioma Registry in improving mesothelioma outcomes and preventing future cases of this devastating disease.

Body mass index at age 18 years and recent body mass index in relation to risk of breast cancer overall and ER/PR/HER2-defined subtypes in white women and African-American women: a pooled analysis.

BACKGROUND: Although it has been well-documented that obesity is associated with decreased risk of premenopausal breast cancer and increased risk of postmenopausal breast cancer, it is unclear whether these associations differ among breast cancer subtypes defined by the tumor protein expression status of estrogen receptor (ER), progesterone receptor (PR), and human epidermal growth factor receptor 2 (HER2). METHODS: We evaluated the associations of body mass index (BMI) at age 18 years and recent BMI in relation to risk of breast cancer overall and ER/PR/HER2-defined subtypes, in 6320 women (3934 case-patient participants, 2386 control participants) aged 35-64 years, who participated in one of three population-based case-control studies. We estimated multivariable-adjusted odd ratios (ORs) and corresponding 95% confidence intervals (CIs) using polychotomous unconditional logistic regression methods for case-control comparisons in premenopausal women and postmenopausal women. RESULTS: BMI at age 18 years was inversely associated with risk of breast cancer, particularly among premenopausal women (≥ 25 vs. < 20 kg/m2, OR = 0.72, 95% CI = 0.53-0.96; per 5 kg/m2 increase, OR = 0.83, 95% CI = 0.73-0.95). This inverse association did not differ across ER/PR/HER2-defined subtypes or by race (white women, African-American women). Recent BMI was not associated with risk of premenopausal breast cancer after adjustment for BMI at age 18 years; nevertheless, the analysis for the joint effects of BMI at age 18 years and recent BMI showed that premenopausal women in the highest categories of the two BMI measures (≥ 25 kg/m2 at age 18 years and ≥ 30 kg/m2 for recent BMI) had 46% lower risk of breast cancer than premenopausal women in the lowest categories of the two BMI measures (< 20 kg/m2 at age 18 years and < 25 kg/m2 for recent BMI; OR = 0.54, 95% CI = 0.38-0.78). Neither measure of BMI was statistically significantly associated with risk of postmenopausal breast cancer. CONCLUSION: Our findings indicate that high BMI near the end of adolescence decreases risk of all ER/PR/HER2-defined subtypes of premenopausal breast cancer and also suggest that this benefit could be maximized among premenopausal women who consistently have high BMI during their premenopausal years.

Obesity, physical activity, and dietary behaviors in an ethnically-diverse sample of cancer survivors with early onset disease.

PURPOSE: To assess weight status, physical activity, and dietary behaviors in an ethnically-diverse sample of breast and colorectal cancer survivors with early onset disease (≤ 50 years). METHODS: Breast and colorectal cancer survivors, diagnosed between 1999 and 2009 with early-stage cancer diagnosed by 50 years of age, were identified through a population-based cancer registry and surveyed. Descriptive and regression analyses were conducted to characterize the sample and identify correlates of lifestyle behaviors. FINDINGS: The majority of participants (n = 156) were female (83%), insured (84%), and racial/ethnic minorities (29% Asian, 24% Latino, 15% African American). Participants' mean age at response was 50 years and mean time since diagnosis was 9 years. Over half of survivors were overweight or obese. Few participants reported engaging in regular physical activity (31%) and adhering to minimum guidelines for fruit and vegetable consumption (32%). A substantial proportion of survivors consumed fast food in the past week (75%) and nearly half (48%) reported daily consumption of sugar-sweetened beverages. Lower income was associated with inadequate fruit and vegetable intake. Fast food and sugar-sweetened beverage consumption was significantly higher among racial/ethnic minority survivors compared to non-Latino whites. CONCLUSIONS: High prevalence of overweight and suboptimal adherence to recommended nutrition and physical activity behaviors were observed among cancer survivors with early onset disease. Cancer survivors diagnosed at a young age may benefit from targeted interventions to address overweight and suboptimal nutrition and physical activity.

Reproductive factors and the risk of triple-negative breast cancer in white women and African-American women: a pooled analysis.

BACKGROUND: Early age at menarche, nulliparity, late age at first completed pregnancy, and never having breastfed, are established breast cancer risk factors. However, among breast cancer subtypes, it remains unclear whether all of these are risk factors for triple-negative breast cancer (TNBC). METHODS: We evaluated the associations of these reproductive factors with TNBC, in 2658 patients with breast cancer (including 554 with TNBC) and 2448 controls aged 20-64 years, who participated in one of the three population-based case-control studies: the Women's Contraceptive and Reproductive Experiences Study, the Women's Breast Carcinoma in situ Study, or the Women's Learning the Influence of Family and Environment Study. We used multivariable polychotomous unconditional logistic regression methods to conduct case-control comparisons among breast cancer subtypes defined by estrogen receptor, progesterone receptor, and human epidermal growth factor receptor-2 expression status. RESULTS: TNBC risk decreased with increasing duration of breastfeeding (P trend = 0.006), but age at menarche, age at first completed pregnancy, and nulliparity were not associated with risk of TNBC. Parous women who breastfed for at least one year had a 31% lower risk of TNBC than parous women who had never breastfed (odds ratio, OR = 0.69; 95% confidence interval, CI = 0.50-0.96). The association between breastfeeding and risk of TNBC was modified by age and race. Parous African-American women aged 20-44 years who breastfed for 6 months or longer had an 82% lower risk of TNBC than their counterparts who had never breastfed (OR = 0.18, 95% CI = 0.07-0.46). CONCLUSIONS: Our data indicate that breastfeeding decreases the risk of TNBC, especially for younger African-American women.

Ethnic differences in the incidence of cancer in Norway.

Traditionally there have been differences in cancer incidence across geographic regions. When immigrants have moved from low-income to high-income countries, their incidence have changed as they have adapted to the lifestyle in the new host country. Given worldwide changes in lifestyle factors over time, we decided to examine cancer incidence in immigrant groups in Norway, a country with a recent immigration history, complete cancer registration and universal public health care. We linked immigration history for the complete population to information on cancer diagnosis from the Cancer Registry of Norway for the period 1990-2012. Age-standardized (world) overall and site-specific cancer incidence were estimated for different immigrant groups and compared to incidence among individuals born in Norway. Among 850,008 immigrants, 9,158 men and 10,334 women developed cancer, and among 5,508,429 Norwegian-born, 263,316 men and 235,020 women developed cancer. While incidence of breast and colorectal cancer were highest among individuals born in Norway and other high-income countries, other cancer types were higher in immigrants from low-income countries. Lung cancer incidence was highest in Eastern European men, and men and women from Eastern Europe had high incidence of stomach cancer. Incidence of liver cancer was substantially higher in immigrants from low-income countries than in individuals born in Norway and other high-income countries. Our results mirror known cancer challenges across the world. Although cancer incidence overall is lower in immigrants from low-income countries, certain cancers, such as lung, liver and stomach cancer, represent major challenges in specific immigrant groups.

Tracing a Path to the Past: Exploring the Use of Commercial Credit Reporting Data to Construct Residential Histories for Epidemiologic Studies of Environmental Exposures.

Large-scale environmental epidemiologic studies often rely on exposure estimates based on linkage to residential addresses. This approach, however, is limited by the lack of residential histories typically available for study participants. Our objective was to evaluate the feasibility of using address data from LexisNexis (a division of RELX, Inc., Dayton, Ohio), a commercially available credit reporting company, to construct residential histories for participants in the California Teachers Study (CTS), a prospective cohort study initiated in 1995-1996 to study breast cancer (n = 133,479). We evaluated the degree to which LexisNexis could provide retrospective addresses prior to study enrollment, as well as the concordance with existing prospective CTS addresses ascertained at the time of the completion of 4 self-administered questionnaires. For approximately 80% of CTS participants, LexisNexis provided at least 1 retrospective address, including nearly 25,000 addresses completely encompassed by time periods prior to enrollment. This approach more than doubled the proportion of the study population for whom we had an address of residence during the childbearing years-an important window of susceptibility for breast cancer risk. While overall concordance between the prospective addresses contained in these 2 data sources was good (85%), it was diminished among black women and women under the age of 40 years.

Chemotherapy decisions and patient experience with the recurrence score assay for early-stage breast cancer.

BACKGROUND: The 21-gene recurrence score (RS) assay stratifies early-stage, estrogen receptor-positive breast cancer by recurrence risk. Few studies have examined the ways in which physicians use the RS to recommend adjuvant systemic chemotherapy or patients' experiences with testing and decision making. METHODS: This study surveyed 3880 women treated for breast cancer in 2013-2014; they were identified from the Los Angeles County and Georgia Surveillance, Epidemiology, and End Results registries (response rate, 71%). Women reported chemotherapy recommendations, the receipt of chemotherapy, testing experiences, and decision satisfaction. Registries linked the tumor data, RS, and surveys. Regression models examined factors associated with chemotherapy recommendations and receipt by the RS and subgroups. RESULTS: There were 1527 patients with stage I/II, estrogen receptor/progesterone receptor-positive, human epidermal growth factor 2-negative disease: 778 received an RS (62.6% of patients with node-negative, favorable disease, 24.3% of patients with node-negative, unfavorable disease, and 13.0% of patients with node-positive disease; P < .001). Overall, 47.2% of the patients received a recommendation against chemotherapy, and 40.5% received a recommendation for it. RS results correlated with recommendations: nearly all patients with high scores (31-100) received a chemotherapy recommendation (86.9%-96.5% across clinical subgroups), whereas the majority of the patients with low-risk results (0-18) received a recommendation against it (65.9%-78.2% across subgroups). Most patients with high RSs received chemotherapy (87.0%, 91.1%, and 100% across subgroups), whereas few patients with low scores received it (2.9%, 9.5%, and 26.6% across subgroups). There were no substantial racial/ethnic differences in testing or treatment. Women were largely satisfied with the RS and chemotherapy decisions. CONCLUSIONS: Oncologists use the RS to personalize treatment, even for those with node-positive disease. High satisfaction and an absence of disparities in testing and treatment suggest that precision-medicine advances have improved systemic breast cancer treatment. Cancer 2017;43-51. © 2016 American Cancer Society.

Surveillance of high-grade cervical cancer precursors (CIN III/AIS) in four population-based cancer registries, United States, 2009-2012.

Surveillance of cervical intraepithelial neoplasia grade III (CIN III) and adenocarcinoma in situ (AIS) is important for determining the burden of a preventable disease, identifying effects of vaccination on future diagnoses, and developing targeted programs. We analyzed population-based rates of high-grade cervical cancer precursor lesions using data from four central cancer registries (diagnosis years 2009-2012 from Louisiana, Kentucky, Michigan, and diagnosis years 2011-2012 from Los Angeles) by age, race, and histology. We also compared rates of precursors to invasive cancers. With 4 complete years of data from Michigan, we were able to conduct a trend analysis for that state. Data analysis was conducted in Atlanta during 2016. Kentucky reported the highest rate of CIN III/AIS (69.8), followed by Michigan (55.4), Louisiana (42.3), and Los Angeles (19.2). CIN III/AIS rates declined among women in Michigan by 37% each year for women aged 15-19, 14% for those aged 20-24, and 7% for those aged 25-29. Rates of CIN III/AIS vary by registry, and were higher than invasive cancer. In Michigan, declines in CIN III/AIS among women aged 15-29 are likely related in part to updated screening recommendations, and to the impact of human papillomavirus vaccination.

Residential cancer cluster investigation nearby a Superfund Study Area with trichloroethylene contamination.

PURPOSE: Trichloroethylene (TCE) is an industrial solvent associated with liver cancer, kidney cancer, and non-Hodgkin's lymphoma (NHL). It is unclear whether an excess of TCE-associated cancers have occurred surrounding the Middlefield-Ellis-Whisman Superfund site in Mountain View, California. We conducted a population-based cancer cluster investigation comparing the incidence of NHL, liver, and kidney cancers in the neighborhood of interest to the incidence among residents in the surrounding four-county region. METHODS: Case counts and address information were obtained using routinely collected data from the Greater Bay Area Cancer Registry, part of the Surveillance, Epidemiology, and End Results program. Population denominators were obtained from the 1990, 2000, and 2010 US censuses. Standardized incidence ratios (SIRs) with two-sided 99 % confidence intervals (CIs) were calculated for time intervals surrounding the US Censuses. RESULTS: There were no statistically significant differences between the neighborhood of interest and the larger region for cancers of the liver or kidney. A statistically significant elevation was observed for NHL during one of the three time periods evaluated (1996-2005: SIR = 1.8, 99 % CI 1.1-2.8). No statistically significant NHL elevation existed in the earlier 1988-1995 (SIR = 1.3, 99 % CI 0.5-2.6) or later 2006-2011 (SIR = 1.3, 99 % CI 0.6-2.4) periods. CONCLUSION: There is no evidence of an increased incidence of liver or kidney cancer, and there is a lack of evidence of a consistent, sustained, or more recent elevation in NHL occurrence in this neighborhood. This evaluation included existing cancer registry data, which cannot speak to specific exposures incurred by past or current residents of this neighborhood.

Disparities in colorectal cancer incidence among Latino subpopulations in California defined by country of origin.

PURPOSE: In California, colorectal cancer (CRC) is the second most common cancer in Latinos. Using data from the California Cancer Registry, we investigated demographic and clinical characteristics of 36,133 Latinos with CRC living in California during 1995-2011 taking into account subpopulations defined by country of origin. METHODS: Cases were defined as Latino according to the North American Association of Central Cancer Registries Hispanic Identification Algorithm, which was also used to group cases by country of origin: Mexico (9,678, 27 %), Central or South America (2,636, 7 %), Cuban (558, 2 %), Puerto Rico (295, 1 %), and other or unknown origin (22,966, 64 %; Other/NOS). 174,710 non-Hispanic white (NHW) CRC cases were included for comparison purposes. Annual age-adjusted incidence rates (AAIR) and proportional incidence ratios (PIRs) were calculated. RESULTS: Differences were observed for age at diagnosis, sex distribution, socioeconomic status (SES), nativity (US born vs. foreign born), stage, and tumor localization across Latino subpopulations and compared to NHW. Mexican Latinos had the lowest AAIR and Cuban Latinos had the highest. PIRs adjusted for age, SES, and nativity showed an excess of CRC males and female cases from Cuba, female cases from Puerto Rico and reduced number of female cases from Mexico. CONCLUSIONS: Differences in cancer incidence patterns and tumor characteristics were observed among Latino subpopulations in California. These disparities may reflect differences in cancer determinants among Latinos; therefore, given that country of origin information is unavailable for a large proportion of these patients, greater efforts to collect these data are warranted.

Body size over the life-course and the risk of endometrial cancer: the California Teachers Study.

PURPOSE: Obesity is a public health epidemic and a major risk factor for endometrial cancer. Here, we identify key aspects of body size which jointly, over the life-course (since adolescence), are associated with endometrial cancer risk. METHODS: Among 88,142 participants in the California Teachers Study, 887 were diagnosed with invasive type 1 endometrial cancer between 1997-1998 and 2012. Multivariable Cox proportional hazards models provided estimates of hazard rate ratios (HR) and 95% confidence intervals (CI) for endometrial cancer associated with life-course body size phenotypes, which incorporated validated measures. RESULTS: Among women currently using hormone therapy, endometrial cancer risk was only associated with height (HR 1.78, 95% CI 1.32-2.40 for ≥67 vs. <67 inches). Among women not using hormone therapy, tall women who were overweight/obese in adolescence (HR 4.33, 95% CI 2.51-7.46) or who became overweight/obese as adults (HR 4.74, 95% CI 2.70-8.32) were at greatest risk. CONCLUSIONS: Considering absolute body mass, changes in adiposity over time, and body fat distribution together, instead of each measure alone, we identified lifetime obesity phenotypes associated with endometrial cancer risk. These results more clearly define specific risk groups, and may explain inconsistent findings across studies, improve risk prediction models, and aid in developing targeted interventions for endometrial cancer.

Validity of Race, Ethnicity, and National Origin in Population-based Cancer Registries and Rapid Case Ascertainment Enhanced With a Spanish Surname List.

BACKGROUND: Accurate information regarding race, ethnicity, and national origins is critical for identifying disparities in the cancer burden. OBJECTIVES: To examine the use of a Spanish surname list to improve the quality of race-related information obtained from rapid case ascertainment (RCA) and to estimate the accuracy of race-related information obtained from cancer registry records collected by routine reporting. SUBJECTS: Self-reported survey responses of 3954 participants from California enrolled in the Cancer Care Outcomes Research and Surveillance Consortium. MEASURES: Sensitivity, specificity, positive predictive value, and percent agreement. We used logistic regression to identify predictors of underreporting and overreporting of a race/ethnicity. RESULTS: Use of the Spanish surname list increased the sensitivity of RCA for Latino ethnicity from 37% to 83%. Sensitivity for cancer registry records collected by routine reporting was ≥95% for whites, blacks, and Asians, and specificity was high for all groups (86%-100%). However, patterns of misclassification by race/ethnicity were found that could lead to biased cancer statistics for specific race/ethnicities. Discordance between self-reported and registry-reported race/ethnicity was more likely for women, Latinos, and Asians. CONCLUSIONS: Methods to improve race and ethnicity data, such as using Spanish surnames in RCA and instituting data collection guidelines for hospitals, are needed to ensure minorities are accurately represented in clinical and epidemiological research.

Comparison of SEER Treatment Data With Medicare Claims.

BACKGROUND: The population-based Surveillance, Epidemiology, and End Results (SEER) registries collect information on first-course treatment, including surgery, chemotherapy, radiation therapy, and hormone therapy. However, the SEER program does not release data on chemotherapy or hormone therapy due to uncertainties regarding data completeness. Activities are ongoing to investigate the opportunity to supplement SEER treatment data with other data sources. METHODS: Using the linked SEER-Medicare data, we examined the validity of the SEER data to identify receipt of chemotherapy and radiation therapy among those aged 65 and older diagnosed from 2000 to 2006 with bladder, female breast, colorectal, lung, ovarian, pancreas, or prostate cancer and hormone therapy among men diagnosed with prostate cancer at age 65 or older. Treatment collected by SEER was compared with treatment as determined by Medicare claims, using Medicare claims as the gold standard. The κ, sensitivity, specificity, positive predictive values, and negative predictive values were calculated for the receipt of each treatment modality. RESULTS: The overall sensitivity of SEER data to identify chemotherapy, radiation, and hormone therapy receipt was moderate (68%, 80%, and 69%, respectively) and varied by cancer site, stage, and patient characteristics. The overall positive predictive value was high (>85%) for all treatment types and cancer sites except chemotherapy for prostate cancer. CONCLUSIONS: SEER data should not generally be used for comparisons of treated and untreated individuals or to estimate the proportion of treated individuals in the population. Augmenting SEER data with other data sources will provide the most accurate treatment information.

The experience of accommodating privacy restrictions during implementation of a large-scale surveillance study of an osteoporosis medication.

PURPOSE: To explore whether privacy restrictions developed to protect patients have complicated research within a 15-year surveillance study conducted with US cancer registries. METHODS: Data from enrolling 27 cancer registries over a 10-year period were examined to describe the amount of time needed to obtain study approval. We also analyzed the proportion of patients that completed a research interview out of the total reported by the registries and examined factors thought to influence this measure. RESULTS: The average length of the research review process from submission to approval of the research was 7 months (range, <1 to 24 months), and it took 6 months or more to obtain approval of the research at 41% of the cancer registries. Most registries (78%) required additional permission steps to gain access to patients for research. After adjustment for covariates, the interview response proportion was 110% greater (ratio of response proportion = 2.1; 95% confidence interval: 1.3, 3.3) when the least restrictive versus the most restrictive permission steps were required. An interview was more often completed for patients (or proxies) if patients were alive, within a year of being diagnosed, or identified earlier in the study. CONCLUSIONS: Lengthy research review processes increased the time between diagnosis and provision of patient information to the researcher. Requiring physician permission for access to patients was associated with lower subject participation. A single national point of entry for use of cancer registry data in health research is worthy of consideration to make the research approval process efficient. © 2016 The Authors. Pharmacoepidemiology and Drug Safety published by John Wiley & Sons Ltd.

Common immune-related exposures/conditions and risk of non-Hodgkin lymphoma: a case-control study of disease-discordant twin pairs.

We evaluated the association between common immune system-altering experiences and non-Hodgkin lymphoma (NHL) risk using a case-control study of 162 like-sex twin pairs discordant for NHL, identified from the International Twin Study. Information on medical history and evidence of childhood exposure to microbes was obtained by questionnaire from 1998 to 2002. Conditional logistic regression was used to estimate odds ratios and 95% confidence intervals. Intra-twin-pair agreement between twins on individual exposures was high (76%-97%). A negative association between NHL and seasonal hay fever (odds ratio (OR) = 0.28, 95% confidence interval (CI): 0.10, 0.75) and certain allergies (OR = 0.29, 95% CI: 0.13, 0.68) was observed. The number of atopic diseases was negatively associated with NHL (P for trend = 0.0003). A history of infectious mononucleosis was negatively associated with NHL risk (OR = 0.35, 95% CI: 0.14, 0.90). NHL risk was associated with more frequent childhood exposure to microbes during early life (P for trend = 0.04). No differences in association by NHL subtype were observed, although statistical power for these comparisons was low. These observations support the hypothesis that immune-related exposures, especially atopy, are associated with decreased NHL risk. Use of the within-twin-pair study design mitigates confounding by genome, family structure, and unmeasured characteristics of early childhood factors.

Case-linked analysis of clinical trial enrollment among adolescents and young adults at a National Cancer Institute-designated comprehensive cancer center.

BACKGROUND: Poor accrual to cancer clinical trials may contribute to the lower improvement in survival observed for adolescents and young adults (AYAs) (those aged 15-39 years) with cancer. This has been difficult to quantify without reliable mechanisms to link incident cases with study enrollments. Using unique resources available at their National Cancer Institute-designated comprehensive cancer center, the authors compared the percentage of AYAs, children, and older adults enrolled onto cancer clinical trials and determined predictors of enrollment. METHODS: Patients diagnosed with cancer from January 2008 through December 2012 at 1 pediatric and 2 adult University of Southern California hospitals were identified through the California Cancer Registry and individually linked to institutional trial enrollment databases. The availability of clinical trials was assessed. RESULTS: Across the center, the enrollment percentage for AYAs (6%) was equal to that of older adults (6%), but was less than that for children (22%) (P < .01). Within the children's hospital, the AYA enrollment percentage was also less than that for children (15% vs 23%, respectively; P<.01). On multivariate analysis, diagnosis and site of care were found to be predictive of AYA enrollment onto therapeutic and nontherapeutic studies. Hispanic and Asian/Pacific Islander individuals were more likely to enroll onto nontherapeutic studies compared with non-Hispanic whites, but no racial/ethnic difference was observed for therapeutic studies. CONCLUSIONS: In the current study, the percentages of AYAs and older adults enrolled onto therapeutic trials were low but similar. Diagnosis, site of care, and race/ethnicity appear to be predictive of enrollment. Prospective mechanisms must be instituted to capture reasons for nonenrollment of AYAs and develop corrective interventions.