Surveillance research is of great importance for effective and efficient epidemiological monitoring of case counts and disease prevalence. Taking specific motivation from ongoing efforts to identify recurrent cases based on the Georgia Cancer Registry, we extend recently proposed “anchor stream” sampling design and estimation methodology. Our approach offers a more efficient and defensible alternative to traditional capture-recapture (CRC) methods by leveraging a relatively small random sample of participants whose recurrence status is obtained through a principled application of medical records abstraction. This sample is combined with one or more existing signaling data streams, which may yield data based on arbitrarily non-representative subsets of the full registry population. The key extension developed here accounts for the common problem of false positive or negative diagnostic signals from the existing data stream(s). In particular, we show that the design only requires documentation of positive signals in these non-anchor surveillance streams, and permits valid estimation of the true case count based on an estimable positive predictive value (PPV) parameter. We borrow ideas from the multiple imputation paradigm to provide accompanying standard errors, and develop an adapted Bayesian credible interval approach that yields favorable frequentist coverage properties. We demonstrate the benefits of the proposed methods through simulation studies, and provide a data example targeting estimation of the breast cancer recurrence case count among Metro Atlanta area patients from the Georgia Cancer Registry-based Cancer Recurrence Information and Surveillance Program (CRISP) database.

Objective: Lack of access to supportive care (SC) among cancer patients have been well documented. However, the role of affordability in this disparity among ovarian cancer (OC) patients remain poorly understood. Methods: Patients with OC between 2008–2015 were identified from the SEER-Medicare dataset. Racial disparities in utilization of SC medications within the 6 months of OC diagnosis among patients with Medicare Part D coverage was examined. Multivariable log-binomial regression models were used to examine the associations of race, affordability and SC medications after adjusting for clinical covariates among all patients and separately among patients with advanced-stage disease. Results: The study cohort included 3,697 patients: 86% non-Hispanic White (NHW), 6% non-Hispanic Black (NHB), and 8% Hispanic. In adjusted models, NHB and Hispanic patients were less likely to receive antidepressants compared to NHW patients (NHB: aOR 0.46; 95% CI 0.33–0.63 and Hispanic: aOR 0.79; 95% CI 0.63–0.99). This association persisted for NHB patients with advanced-stage disease (aOR 0.42; 95% CI 0.28–0.62). Patients dual enrolled in Medicaid were more likely to receive antidepressants (overall: aOR 1.34; 95% CI 1.17–1.53 and advanced-stage: aOR 1.29; 95% CI 1.10–1.52). However, patients residing in areas with higher vs. lower proportions of lower educated adults (overall: aOR 0.82; 95% CI 0.70–0.97 and advanced-stage: aOR 0.82; 95% CI 0.68–0.99) were less likely to receive antidepressants. Conclusions: Black OC patients and those living in lower educated areas were less likely to receive antidepressants as SC. Given the importance of post-primary treatment quality of life for cancer patients, interventions are needed to enhance equitable access to SC.

Introduction Encouraging family communication about possible genetic risk has become among the most important avenues for achieving the full potential of genomic discovery for primary and secondary prevention. Yet, effective family-wide risk communication (i.e., conveying genetic risk status and its meaning for other family members) remains a critical gap in the field. We aim to describe the iterative process of developing a scalable population-based communication outreach intervention, Your Family Connects, to reach ovarian cancer survivors and close relatives to communicate the potential for inherited risk and to consider genetic counseling. Methods Relational-level theories (e.g., interdependence theory) suggest that interventions to promote family cancer risk communication will be most effective if they consider the qualities of specific relationships and activate motives to preserve the relationship. Informed by these theories, we collaborated with 14 citizen scientists (survivors of ovarian cancer or relatives) and collected 261 surveys and 39 structured interviews over 12 weeks of citizen science activities in 2020. Results The citizen science findings and consideration of relational-level theories informed the content and implementation of Your Family Connects (www.yourfamilyconnects.org). CS results showed survivors favor personal contact with close relatives, but relatives were open to alternative contact methods, such as through health professionals. Recognizing the need for varied approaches based on relationship dynamics, we implemented a relative contact menu to enable survivors identify at-risk relatives and provide multiple contact options (i.e., survivor contact, health professional contact, and delayed contact). In line with relational autonomy principles, we included pros and cons for each option, assisting survivors in choosing suitable contact methods for each relative. Discussion Our developed intervention represents a novel application of relational-level theories and partnership with citizen scientists to expand genetic services reach to increase the likelihood for fair distribution of cancer genomic advances. The Your Family Connects intervention as part of a randomized trial in collaboration with the Georgia Cancer Registry compared with standard outreach.

PURPOSE: The DecisionDx-Melanoma 31-gene expression profile (31-GEP) test is validated to classify cutaneous malignant melanoma (CM) patient risk of recurrence, metastasis, or death as low (class 1A), intermediate (class 1B/2A), or high (class 2B). This study aimed to examine the effect of 31-GEP testing on survival outcomes and confirm the prognostic ability of the 31-GEP at the population level. METHODS: Patients with stage I-III CM with a clinical 31-GEP result between 2016 and 2018 were linked to data from 17 SEER registries (n = 4,687) following registries' operation procedures for linkages. Melanoma-specific survival (MSS) and overall survival (OS) differences by 31-GEP risk category were examined using Kaplan-Meier analysis and the log-rank test. Crude and adjusted hazard ratios (HRs) were calculated using Cox regression model to evaluate variables associated with survival. 31-GEP tested patients were propensity score–matched to a cohort of non–31-GEP tested patients from the SEER database. Robustness of the effect of 31-GEP testing was assessed using resampling. RESULTS: Patients with a 31-GEP class 1A result had higher 3-year MSS and OS than patients with a class 1B/2A or class 2B result (MSS: 99.7% v 97.1% v 89.6%, P < .001; OS: 96.6% v 90.2% v 79.4%, P < .001). A class 2B result was an independent predictor of MSS (HR, 7.00; 95% CI, 2.70 to 18.00) and OS (HR, 2.39; 95% CI, 1.54 to 3.70). 31-GEP testing was associated with a 29% lower MSS mortality (HR, 0.71; 95% CI, 0.53 to 0.94) and 17% lower overall mortality (HR, 0.83; 95% CI, 0.70 to 0.99) relative to untested patients. CONCLUSION: In a population-based, clinically tested melanoma cohort, the 31-GEP stratified patients by their risk of dying from melanoma. Patients clinically tested with the 31-GEP had higher melanoma-specific survival relative to untested patients.

Background: Racial disparities in non-Hodgkin lymphoma (NHL) are not well-elucidated for specific catchment areas, which can influence outcomes. Leveraging regional data from a population-based cancer registry may provide unique opportunities to quantify NHL disparities. Materials and Methods: Using Surveillance, Epidemiology, and End Results (SEER) data for NHL cases diagnosed in Georgia from 2001 to 2015, we examined NHL incidence rates by lymphoma subtype and racial differences in baseline characteristics and outcomes for diffuse large B-cell lymphoma (DLBCL) and follicular lymphoma (FL). Cox regression models identified predictors of overall survival (OS). Results: SEER documented 38,504 NHL cases in Georgia from 2001 to 2015. The age-adjusted incidence rate for NHL in Georgia increased 1.03% per year, and the annual percentage change was 1.72 in blacks compared with 0.84 in whites. Compared with whites, blacks with DLBCL and FL were more likely to be diagnosed at a younger age (DLBCL, 54.1 vs. 65.5 years; P <.0001; FL, 58.4 vs. 64.0 years; P <.0001) and with B symptoms (DLBCL, 44.4% vs. 33.4%; P <.0001; FL, 28.5% vs. 21.4%; P =.004). Across racial categories, age at diagnosis > 60 years, advanced stage, and B symptoms predicted worse OS in DLBCL and FL. Blacks with DLBCL more commonly were diagnosed with stage III/IV disease (55.5% vs. 48.1%; P <.0001) and had worse 5-year relative survival (58.8% vs. 62.3%; P =.01). Conclusions: Regional cancer registry data can be used to define incidence patterns and disparities in outcomes across NHL subtypes to help define key targets for interventions in a catchment area. In a retrospective analysis of 38,504 lymphoma diagnoses in Georgia between 2001 and 2015, we found that, compared with whites, blacks with diffuse large B-cell lymphoma and follicular lymphoma were more likely to present at a younger age and experience B symptoms. Future research utilizing population-based data to address disparities in presentation and outcomes within a catchment area is needed.

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.

IMPORTANCE Low-cost sequencing of multiple genes is increasingly available for cancer risk assessment. Little is known about uptake or outcomes of multiple-gene sequencing after breast cancer diagnosis in community practice. OBJECTIVE To examine the effect of multiple-gene sequencing on the experience and treatment outcomes for patients with breast cancer. DESIGN, SETTING, AND PARTICIPANTS For this population-based retrospective cohort study, patients with breast cancer diagnosed from January 2013 to December 2015 and accrued from SEER registries across Georgia and in Los Angeles, California, were surveyed (n = 5080, response rate = 70%). Responses were merged with SEER data and results of clinical genetic tests, either BRCA1 and BRCA2 (BRCA1/2) sequencing only or including additional other genes (multiple-gene sequencing), provided by 4 laboratories. MAIN OUTCOMES AND MEASURES Type of testing (multiple-gene sequencing vs BRCA1/2-only sequencing), test results (negative, variant of unknown significance, or pathogenic variant), patient experiences with testing (timing of testing, who discussed results), and treatment (strength of patient consideration of, and surgeon recommendation for, prophylactic mastectomy), and prophylactic mastectomy receipt. We defined a patient subgroup with higher pretest risk of carrying a pathogenic variant according to practice guidelines. RESULTS Among 5026 patients (mean [SD] age, 59.9 [10.7] years), 1316 (26.2%) were linked to genetic results from any laboratory. Multiple-gene sequencing increasingly replaced BRCA1/2-only testing over time: in 2013, the rate of multiple-gene sequencing was 25.6% and BRCA1/2-only testing, 74.4%; in 2015 the rate of multiple-gene sequencing was 66.5% and BRCA1/2-only testing, 33.5%. Multiple-gene sequencing was more often ordered by genetic counselors (multiple-gene sequencing, 25.5% and BRCA1/2-only testing, 15.3%) and delayed until after surgery (multiple-gene sequencing, 32.5% and BRCA1/2-only testing, 19.9%). Multiple-gene sequencing substantially increased rate of detection of any pathogenic variant (multiple-gene sequencing: higher-risk patients, 12%; average-risk patients, 4.2% and BRCA1/2-only testing: higher-risk patients, 7.8%; average-risk patients, 2.2%) and variants of uncertain significance, especially in minorities (multiple-gene sequencing: white patients, 23.7%; black patients, 44.5%; and Asian patients, 50.9% and BRCA1/2-only testing: white patients, 2.2%; black patients, 5.6%; and Asian patients, 0%). Multiple-gene sequencing was not associated with an increase in the rate of prophylactic mastectomy use, which was highest with pathogenic variants in BRCA1/2 (BRCA1/2, 79.0%; other pathogenic variant, 37.6%; variant of uncertain significance, 30.2%; negative, 35.3%). CONCLUSIONS AND RELEVANCE Multiple-gene sequencing rapidly replaced BRCA1/2-only testing for patients with breast cancer in the community and enabled 2-fold higher detection of clinically relevant pathogenic variants without an associated increase in prophylactic mastectomy. However, important targets for improvement in the clinical utility of multiple-gene sequencing include postsurgical delay and racial/ethnic disparity in variants of uncertain significance.

Background Radiotherapy omission after lumpectomy is a reasonable option for many older women with favorable prognosis breast cancer. We sought to evaluate patient perspectives regarding decision-making about radiotherapy (RT). Methods Women age 65–79 with stage I and II breast cancer reported to the Georgia and Los Angeles County SEER registries were surveyed (response rate=70%) regarding radiotherapy decisions, the rationale for omitting RT, decision-making values, and understanding of recurrence risk. We also surveyed their corresponding surgeons (response rate=77%). We evaluated patient characteristics associated with omission of RT using multilevel, multivariable logistic regression, accounting for patient clustering within surgeons. Results Of 999 patients, 135 omitted RT (14%). Older age, lower grade, and estrogen receptor-positive disease were each strongly associated with omission of RT in multivariable analyses, whereas number of comorbidities was not. Non-English speakers were more likely to omit RT (adjusted OR 5.9, 95% CI 1.4–24.5). The most commonly reported reasons for RT omission were that a physician advised the patient it was not needed (54% of patients who omitted RT) and patient choice (41%). Local recurrence risk was overestimated by all patients, by about 2-fold among those who omitted radiation and 8-fold among those who received radiotherapy. Distant disease recurrence risk was overestimated 3-fold on average. Conclusions To some extent, decisions about radiotherapy omission are appropriately influenced by age, grade, and estrogen receptor status, but do not appear to be optimally tailored according to competing comorbidities. Many women who are candidates for radiotherapy omission overestimate their risk of recurrence.

BACKGROUND: Little is known about the size and characteristics of the decision-support networks of women newly diagnosed with breast cancer and whether their involvement improves breast cancer treatment decisions. METHODS: A population-based sample of patients newly diagnosed with breast cancer in 2014 and 2015, as reported to the Georgia and Los Angeles Surveillance, Epidemiology, and End Results registries, were surveyed approximately 7 months after diagnosis (N = 2502; response rate, 68%). Network size was estimated by asking women to list up to 3 of the most important decision-support persons (DSPs) who helped them with locoregional therapy decisions. Decision deliberation was measured using 4 items assessing the degree to which patients thought through the decision, with higher scores reflecting more deliberative breast cancer treatment decisions. The size of the network (range, 0-3 or more) was compared across patient-level characteristics, and adjusted mean deliberation scores were estimated across levels of network size using multivariable linear regression. RESULTS: Of the 2502 women included in this analysis, 51% reported having 3 or more DSPs, 20% reported 2, 18% reported 1, and 11% reported not having any DSPs. Married/partnered women, those younger than 45 years, and black women all were more likely to report larger network sizes (all P <.001). Larger support networks were associated with more deliberative surgical treatment decisions (P <.001). CONCLUSIONS: Most women engaged multiple DSPs in their treatment decision making, and involving more DSPs was associated with more deliberative treatment decisions. Future initiatives to improve treatment decision making among women with breast cancer should acknowledge and engage informal DSPs. Cancer 2017;123:3895-903. © 2017 American Cancer Society.

Purpose: We know little about whether it matters which oncologist a breast cancer patient sees with regard to receipt of chemotherapy. We examined oncologists’ influence on use of recurrence score (RS) testing and chemotherapy in the community. Methods: We identified 7810 women with stages 0-II breast cancer treated in 2013-15 through the SEER registries of Georgia and Los Angeles County. Surveys were sent 2 months post-surgery, (70% response rate, n = 5080). Patients identified their oncologists (n = 504) of whom 304 responded to surveys (60%). We conducted multi-level analyses on patients with ER-positive HER2-negative invasive disease (N = 2973) to examine oncologists’ influence on variation in RS testing and chemotherapy receipt, using patient and oncologist survey responses merged to SEER data. Results: Half of patients (52.8%) received RS testing and 27.7% chemotherapy. One-third (35.9%) of oncologists treated >50 new breast cancer patients annually; mean years in practice was 15.8. Oncologists explained 17% of the variation in RS testing but little of the variation in chemotherapy receipt (3%) controlling for clinical factors. Patients seeing an oncologist who was one standard deviation above the mean use of RS testing had over two-times higher odds of receiving RS (2.47, 95% CI 1.47–4.15), but a parallel estimate of the association of oncologist with the odds of receiving chemotherapy was much smaller (1.39, CI 1.03–1.88). Conclusions: Clinical algorithms have markedly reduced variation in chemotherapy use across oncologists. Oncologists’ large influence on variation in RS use suggests that they variably seek tumor profiling to inform treatment decisions.