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Introduction: Cancer is rare in adolescents and young adults (AYA), but these patients have seen little improvement in survival in contrast to most other age groups. Furthermore, participation in research by AYAs is typically low. We conducted a study to examine the feasibility of recruiting a population-based sample of AYA survivors to examine issues of treatment and health outcomes.Methods: Individuals diagnosed in 2007-08 and age 15-39 at the time of diagnosis with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma were identified by 7 Surveillance, Epidemiology, and End-Results (SEER) cancer registries, mailed surveys within 14 months after diagnosis and again a year later, and had medical records reviewed.Results: 525 (43%) of the eligible patients responded, 39% refused and 17% were lost to follow-up. Extensive efforts were required for most potential respondents (87%). 76% of respondents completed the paper rather than online survey version. In a multivariate model, age, cancer site, education and months from diagnosis to the first mailing of the survey were not associated with participation, although males (p  <  0.01), Hispanics and non-Hispanic blacks (p  <  0.001) were less likely to participate. 91% of survivors completing the initial survey completed the subsequent survey.Discussion: Despite the response rate, those who participated adequately reflected the population of AYA cancer survivors. The study demonstrates that cancer registries are valuable foundations for conducting observational, longitudinal population-based research on AYA cancer survivors.Implications For Cancer Survivors: Achieving a reasonable response rate in this population is possible, but requires extensive resources. [ABSTRACT FROM AUTHOR]

BACKGROUND:: Identifying appropriate comorbidity data sources is a key consideration in health services and outcomes research. OBJECTIVE:: Using cancer patients as an example, we compared comorbid conditions identified: 1) on the discharge facesheet versus full hospital medical record and 2) in the hospital record versus Medicare claims, both precancer diagnosis and associated with a cancer treatment-related index hospitalization. METHODS:: We used data from 1995 Surveillance, Epidemiology and End Results patterns of care studies for 1382 patients. Comorbid conditions were ascertained from the hospital record associated with the most definitive cancer treatment and Medicare claims. We calculated the prevalence for and assessed concordances among 12 conditions derived from the hospital record facesheet; full hospital record; Medicare claims precancer diagnosis, with and without a rule-out algorithm applied; and Medicare claims associated with an index hospitalization. RESULTS:: The proportion of patients with one or more comorbid conditions varied by data source, from 21% for the facesheet to 85% for prediagnosis Medicare claims without the rule-out algorithm. Condition prevalences were substantially lower for the facesheet compared with the full hospital record. For prediagnosis Medicare claims, condition prevalences were more than 1.7 times greater in the absence of an algorithm to screen for rule-out diagnoses. Measures assessing concordance between the full hospital record and prediagnosis Medicare claims (rule-out algorithm applied) showed modest agreement. CONCLUSIONS:: The hospital record and Medicare claims are complementary data sources for identifying comorbid conditions. Comorbidity is greatly underascertained when derived only from the facesheet of the hospital record. Investigators using Part B Medicare claims to measure comorbidity should remove conditions that are listed for purposes of generating bills but are not true comorbidities. [ABSTRACT FROM AUTHOR]

Background: Comorbidity is an important dimension of patient health status. However, limited attention has been given to assessing the reliability of patient-reported data on comorbid conditions.Objectives: We sought to evaluate the consistency of self-report of 12 comorbid conditions at 3 distinct time points and examine the sociodemographic, clinical, health status, and survey factors associated with reliability.Study Design: We undertook a longitudinal cohort analysis of survey and medical record abstract data obtained from a population-based sample of 3095 prostate cancer survivors.Methods: Consistent and inconsistent response patterns were assessed using descriptive statistics and regression modeling.Results: More than half of the cohort demonstrated consistent responses to all comorbid condition questionnaire items. Arthritis had the highest (13%) and liver disease the lowest (1%) proportion of inconsistent responses. Older age, lower income, and poorer general and mental health status were significant predictors of inconsistent responses. Subset analyses of the 4 most prevalent comorbid conditions (ie, arthritis, diabetes, hypertension, and depression) showed that respondents who reported that they were limited by, or taking prescription medicine for, the condition were more likely to provide consistent responses than those neither limited nor taking medicine. Response consistencies of 92% or better were obtained for 11 of the 12 conditions.Conclusions: Men with a relatively recent prostate cancer diagnosis are generally able to provide reliable reports of their concomitant health conditions. To increase the likelihood of obtaining reliable data, investigators should consider ascertaining condition severity and current medical management when querying subjects about comorbid conditions in surveys. [ABSTRACT FROM AUTHOR]

Background: Radical prostatectomy and external beam radiotherapy are the two major therapeutic options for treating clinically localized prostate cancer. Because survival is often favorable regardless of therapy, treatment decisions may depend on other therapy-specific health outcomes. In this study, we compared the effects of two treatments on urinary, bowel, and sexual functions and on general health-related quality-of-life outcomes over a 2-year period following initial treatment.Methods: A diverse cohort of patients aged 55-74 years who were newly diagnosed with clinically localized prostate cancer and received either radical prostatectomy (n = 1156) or external beam radiotherapy (n = 435) were included in this study. A propensity score was used to balance the two treatment groups because they differed in some baseline characteristics. This score was used in multivariable cross-sectional and longitudinal regression analyses comparing the treatment groups. All statistical tests were two-sided.Results: Almost 2 years after treatment, men receiving radical prostatectomy were more likely than men receiving radiotherapy to be incontinent (9.6% versus 3.5%; P:<.001) and to have higher rates of impotence (79.6% versus 61.5%; P:<.001), although large, statistically significant declines in sexual function were observed in both treatment groups. In contrast, men receiving radiotherapy reported greater declines in bowel function than did men receiving radical prostatectomy. All of these differences remained after adjustments for propensity score. The treatment groups were similar in terms of general health-related quality of life.Conclusions: There are important differences in urinary, bowel, and sexual functions over 2 years after different treatments for clinically localized prostate cancer. In contrast to previous reports, these outcome differences reflect treatment delivered to a heterogeneous group of patients in diverse health care settings. These results provide comprehensive and representative information about long-term treatment complications to help guide and inform patients and clinicians about prostate cancer treatment decisions. [ABSTRACT FROM AUTHOR]

Oral anticancer medications (OAMs) are increasingly utilized. We evaluated the representativeness and completeness of IQVIA, a large aggregator of pharmacy data, for breast cancer, colon cancer, chronic myeloid leukemia, and myeloma cases diagnosed in six Surveillance, Epidemiology, and End Results Program (SEER) registries between 2007 and 2011. Patient's SEER and SEER-Medicare data were linked and compared with IQVIA pharmacy data from 2006 to 2012 for specific OAMs. Overall, 67.6% of SEER cases had a pharmacy claim in IQVIA during the treatment assessment window. This varied by location, race and ethnicity, and insurance status. IQVIA consistently identified fewer cases who received an OAM of interest than SEER-Medicare. The difference was least pronounced for breast cancer agents and most pronounced for myeloma agents. The IQVIA pharmacy database included a large portion of persons in the SEER areas. Future studies should assess receipt of OAMs for other cancer sites and in different SEER registries., (Published by Oxford University Press 2020. This work is written by US Government employees and is in the public domain in the US.)

Background: Black women with ovarian cancer experience worse survival than white women. Receipt of guideline care improves survival, yet care may vary by race. We assessed rates of guideline care and role of guideline treatment on survival disparities., Methods: This retrospective cohort analysis used the NCI's Patterns of Care data for women diagnosed with ovarian cancer, 2002 and 2011 (weighted n = 3,999), with follow-up through December 12, 2014. Logistic regression included patient characteristics, insurance, and gynecologic oncologist (GO) consultation to produce adjusted standardized percentages of women receiving guideline treatment by race. Cox proportional hazards analysis assessed risk of ovarian cancer death., Results: Guideline care was significantly lower for black women compared with white women (adjusted 27.5% vs. 34.1%). Increased receipt of guideline care was associated with GO consultation, younger ages, stage, and insurance. Rates of GO consultation were comparable for black and white women, approximately 60%. Black women were more likely to receive no surgery or no chemotherapy if they did not consult a GO. The unadjusted death risk was significantly higher in black women (HR = 1.33). After adjusting for receipt of guideline care and other factors, black and white women had similar risk of death (HR = 1.05)., Conclusions: Race was not associated with risk of death when guideline care was included in multivariate survival models. However, black patients received less guideline care. GO consultation significantly increased receipt of guideline care., Impact: Research is needed to understand treatment perspectives for black patients and their providers to increase the receipt of guideline care and reduce survival disparities., (©2018 American Association for Cancer Research.)

Introduction: Non-Hispanic black (NHB) women with breast cancer have poorer survival than non-Hispanic white (NHW) women. Although NHB women are more often diagnosed at later stages, it is less established whether racial disparities exist among women diagnosed with late-stage breast cancer, particularly when care is provided in the community setting., Methods: Treatment and survival were examined by race/ethnicity among women diagnosed in 2012 with stage IIIB-IV breast cancer using the National Cancer Institute's population-based Patterns of Care Study. Medical records were re-abstracted and treating physicians were contacted to verify therapy. Vital status was available through 2014., Results: A total of 533 women with stage IIIB-C and 625 with stage IV tumors were included; NHW women comprised about 70% of each group. Among women with stage IIIB-C disease, racial/ethnicity variations in systemic treatment were not observed but there was a borderline association indicating worse all-cause mortality among NHB women (hazard ratio 1.52; 95% confidence interval (CI) 0.96-2.41). In contrast, among women with stage IV disease, borderline associations indicating NHB women were more likely to receive chemotherapy (OR 1.44, 95% CI 0.90-2.30) and, among those with hormone receptor-positive tumors, less likely to receive endocrine therapy (OR 0.60, 95% CI 0.35-1.04). All-cause mortality did not vary by race/ethnicity for stage IV disease (hazard ratio 0.92; 95% CI 0.68-1.25)., Conclusions: More research is needed to identify additional factors associated with the potential survival disparities among women with stage IIIB-C disease and potential treatment disparities among women with stage IV disease.

Purpose of the Study: Adolescent and young adult (AYA) cancer patients are underrepresented in clinical trials, but the reasons for this phenomenon are unknown., Patients and Methods: Questionnaire and medical record data from 515 AYA cancer patients (21 acute lymphocytic leukemia [ALL], 201 germ cell tumor, 141 Hodgkin lymphoma, 128 non-Hodgkin lymphoma, 24 sarcoma) from a population-based study were analyzed. We used multivariable models to determine characteristics associated with patient knowledge of the availability of clinical trials for their cancer. Reasons for not participating in a trial were tabulated., Results: In total, 63% of patients reported not knowing whether a relevant clinical trial was available, 20% reported knowing that a clinical trial was not available, and 17% reported that a trial was available. Among patients reporting an available trial, 67% were recommended for enrollment. Knowing about the availability of clinical trials was associated with having ALL (odds ratio=2.9, 95% confidence interval=1.1, 7.8). Reporting that a clinical trial was available was positively associated with having ALL, Hodgkin lymphoma, non-Hodgkin lymphoma and sarcoma (relative to germ cell tumor) and working full-time or in school full-time (odds ratio=2.6, 95% confidence interval=1.0, 6.7). Concerns about involvement in research (57%) and problems accessing trials (21%) were the primary reasons cited for not enrolling among patients who knew that a trial was available., Conclusions: Improvement in AYA cancer patient clinical trial enrollment will require enhancing knowledge about trial availability and addressing this population's concerns about participating in medical research.

Background: Cancer health services research is a primary tool for analyzing the association between various factors, cancer health care delivery, and the resultant outcomes. To address disparities strategies must be developed to target factors that are related to differences in care; however, to date, most disparities studies have been descriptive. The primary objective was to describe cancer treatment and survival disparities in community oncology practice patterns found in the National Cancer Institute's population-based Patterns of Care (POC) Study (1987-2017). Secondarily, we compared POC findings to peer-reviewed literature. In POC data, older age was consistently associated with decreased odds of treatment and increased mortality. Interestingly, in contrast to current literature, few POC studies found race/ethnicity significantly predicted disparities. Cancer health disparities are complex; they are multifactorial, differ by cancer site and may wax and wane. The complexity supports the need for deeper understanding and targeted interventions to ensure equitable cancer care and outcomes.

Background: Childhood neuroblastoma describes a heterogeneous group of extracranial solid tumors, that are treated per risk profile. We sought to describe treatment patterns and survival using population-based data from throughout the United States., Materials and Methods: Using the National Cancer Institute (NCI)'s Patterns of Care data, we analyzed treatment provided to newly diagnosed, histologically confirmed neuroblastoma patients in 2010 and 2011, registered to one of 14 Surveillance, Epidemiology, and End Results (SEER) cancer registries. Data were re-abstracted from hospital records and treating physicians contacted for verification. Application of the Children's Oncology Group (COG)'s 3-level (low, intermediate and high) neuroblastoma risk classification system for therapeutic decision-making provided insight to community-based treatment patterns. Kaplan-Meier survival analyses, based on 5-years of follow-up, were also performed., Results: 76% of the 250 patients were enrolled on an open/active clinical trial. All low-risk patients received surgery. Most intermediate-risk patients (81%) received a chemotherapy regimen that included carboplatin, etoposide, cyclophosphamide and doxorubicin. High-risk patients received extensive, multimodal treatment consisting of chemotherapy, surgery, myeloablative chemotherapy with stem cell rescue (transplant), radiation, immunotherapy (dinutuximab), and isotretinoin therapy. 21% patients had died at the end of the maximum 60-month follow-up period. The 5-year estimated survival rates were lower for patients diagnosed with stage 4 disease, unfavorable DNA ploidy, MYCN gene amplification or classified as high-risk., Conclusion: Most neuroblastoma patients are registered on a risk-based open/active clinical trial. Variation in modality, systemic agents and sequence of treatment reflects the heterogeneity of therapy received by these patients.

Background: The adoption of sorafenib into oncology practice as a first-line systemic treatment for advanced hepatocellular carcinoma (HCC) is not well understood. We examined sorafenib use since Food and Drug Administration (FDA) approval in 2007 and associated survival for individuals diagnosed with advanced HCC, conducting a population-based evaluation of treatment patterns and outcomes for this newly approved drug in the US over time., Methods: We identified individuals diagnosed with Barcelona Clinic Liver Cancer Stage C from the 2007 and 2012 National Cancer Institute Patterns of Care study. We examined trends in use as well as patient and clinical factors associated with receiving sorafenib using multivariate logistic regression analysis. We then evaluated the association between sorafenib use and overall hazard of death using multivariate Cox proportional hazards regression., Results: Among 550 individuals diagnosed with advanced HCC, we found no significant increase in the proportion of patients treated with sorafenib from 2007 to 2012 (26.3 vs. 30.4%). After adjusting for patient and clinical characteristics, non-Hispanic Blacks (compared to non-Hispanic Whites) and those with a lower Child-Pugh score remained more likely to receive sorafenib. Individuals receiving systemic chemotherapy only, radiation therapy only, or no treatment at all experienced a higher risk of death than those treated with sorafenib, while those receiving a transplant experienced a lower risk of death., Conclusions: Sorafenib has not been widely adopted into oncology practice since FDA approval for advanced HCC. Few factors apart from Child-Pugh score and race/ethnicity predict sorafenib use in clinical practice, although sorafenib treatment is associated with a lower risk of death.

Background: We assessed trends in the receipt of guideline care and 2-year cause-specific survival for women diagnosed with ovarian cancer., Methods: This retrospective cohort analysis used National Cancer Institute's Patterns of Care studies data for women diagnosed with ovarian cancer in 2002 and 2011 (weighted n=6427). Data included patient characteristics, treatment type, and provider characteristics. We used logistic regression to evaluate the association of year of diagnosis with receipt of guideline surgery, multiagent chemotherapy, or both. Two-year cause-specific survival, 2002-2013, was assessed using SEER data., Results: The adjusted rate of women who received stage-appropriate surgery, 48%, was unchanged from 2002 to 2011. Gynecologic oncologist (GO) consultations increased from 43% (2002) to 78% (2011). GO consultation was a significant predictor for receipt of guideline care, although only 40% of women who saw a GO received guideline surgery and chemotherapy. The percent of women who received guideline surgery and chemotherapy increased significantly from 32% in 2002 to 37% in 2011. From 2002 to 2011, 2-year cause-specific ovarian cancer survival was unchanged for Stages I-III cancers, with slight improvement for Stage IV cancers., Conclusion: Receipt of guideline care has improved modestly from 2002-2011 for women with ovarian cancer. Current treatment is far below clinical recommendations and may explain limited improvement in 2-year cause-specific survival. Most women consulted a GO in 2011 yet did not receive guideline care. There needs to be a better understanding of the decision-making process about treatment during the consultation with GOs and other factors precluding receipt of guideline care., (Published by Elsevier Inc.)

Introduction: Lung cancer remains a common and deadly cancer in the United States. This study evaluated factors associated with stage-specific cancer therapy and survival focusing on temporal trends and sociodemographic disparities., Methods: A random sample (n=3,318) of non-small cell lung cancer (NSCLC) patients diagnosed in 1996, 2005 and 2010, and reported to the National Cancer Institute's Surveillance Epidemiology and End Results (SEER) program was analyzed. Logistic regression was utilized to identify factors associated with receipt of surgery among stage I/II patients and chemotherapy among stage IIIB/IV patients. Cox proportional hazard regression was utilized to assess factors associated with all-cause mortality, stratified by stage., Results: Surgery among stage I/II patients decreased non-significantly overtime (1996: 78.8%; 2010: 68.5%; p=0.18), whereas receipt of chemotherapy among stage IIIB/IV patients increased significantly overtime (1996: 36.1%; 2010: 51.2%; p<0.01). Receipt of surgery (70-79 and ≥80 vs. <70: Odds Ratio(OR):0.31; 95% Confidence Interval (CI): 0.16-0.63 and OR:0.04; 95% CI: 0.02-0.10, respectively) and chemotherapy (≥80 vs. <70: OR: 0.26; 95% CI:0.15-0.45) was less likely among older patients. Median survival improved non-significantly among stage I/II patients from 51 to 64 months (p=0.75) and significantly among IIIB/IV patients from 4 to 5 months (p<0.01)., Conclusion: Treatment disparities were observed in both stage groups, notably among older patients. Among stage I/II patients, survival did not change significantly possibly due to stable surgery utilization. Among stage IIIB/IV patients, although the use of chemotherapy increased and survival improved, the one-month increase in median survival highlights the need for addition research., Competing Interests: The authors declare that they have no conflict of interest., (Published by Elsevier Ireland Ltd.)

Introduction: The 5-year survival of metastatic melanoma is < 18%. Historically, treatment options were limited. In 2011, 2 new agents were approved., Methods: We re-abstracted the medical records of a random sample (n = 520) of metastatic melanoma patients who had been diagnosed in 2011 and reported to population-based registries in the U.S. We also queried their treating physicians. Factors associated with treatment and survival were assessed using logistic and Cox proportional hazards regressions, respectively., Results: 21.4% of patients received no treatment, 20.8% received ipilimumab and 57.5% of patients with BRAF-positive tumors received vemurafenib/dabrafenib. Receipt of ipilimumab was less likely among patients of 75 years or older (vs. < 55 years: odds ratio (OR) 0.32; 95% confidence interval (CI) 0.15-0.66) and patients without private/military insurance. 46.8% of patients received BRAF testing. Receipt of BRAF testing was less likely among patients of 65 years or more and uninsured patients (OR 0.22; 95% CI 0.07-0.65). Receipt of ipilimumab was associated with better survival during the first 18 months after diagnosis (hazard ratio (HR) 0.66; 95% CI 0.51-0.84) and vemurafenib/dabrafenib with better survival during the first 10 months after diagnosis (HR 0.51; 95% CI 0.36-0.73)., Conclusion: The initial dissemination of ipilimumab and vemurafenib/dabrafenib was limited. Additional research is needed to investigate the apparent lack of long-term survival benefit from these agents., (© 2017 S. Karger GmbH, Freiburg.)

Purpose: To examine national, population-based utilization trends of nephron-sparing and minimally invasive techniques for the surgical management of patients with adult renal cell cancer (RCC) in the United States., Methods: Linked data from the National Cancer Institute׳s Patterns of Care studies and the Area Health Resource File were used to evaluate trends of nephron-sparing and minimally invasive techniques in a sample of 1,110 patients newly diagnosed with American Joint Committee on Cancer stages I-II RCC, in 2004 and 2009, who underwent surgery. Descriptive statistics were used to assess patterns of surgery between 2004 and 2009. Multivariable logistic regression analyses were used to evaluate the associations between demographic, clinical, hospital, and area-level health care characteristics with surgery utilization, stratified by the subset of patients who were potentially eligible for partial nephrectomy (PN) vs. radical nephrectomy (RN) and laparoscopic RN (LRN) vs. open RN, respectively., Results: Between 2004 and 2009, PN use among stage I patients with tumors≤7cm increased from 29% to 41%, respectively (P = 0.22). Among patients with stage I tumors≤4cm, use of PN significantly increased from 43% in 2004 to 55% in 2009 (P≤0.05). Among patients with stage I tumors>4 to 7cm, laparoscopic partial nephrectomy increased from 8% to 15%, whereas LRN increased from 38% to 69%, between 2004 and 2009 (P = 0.07). Significant increases in LRN use were observed for both stage I (from 43% in 2004 to 58% in 2009; P≤0.05) and stage II patients (from 16% in 2004 to 47% in 2009; P≤0.01). Patients diagnosed at an older age, with larger tumors, non-clear cell RCC and who did not receive treatment in a hospital with residency training were significantly less likely to receive PN vs. RN; whereas, those diagnosed in 2009 with stage I disease were significantly more likely to receive LRN vs. open RN., Conclusions: This study highlights a significant shift toward increased use of nephron-sparing and minimally invasive surgical techniques to treat patients with RCC in the United States. Our findings are among the first population-based reports in which most eligible patients with RCC received PN over RN. In light of the long-standing evidence on the improved patient outcomes, future investigation is warranted to identify the barriers to increased adoption of these nephron-sparing and minimally invasive approaches., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Background: Incidence rates and trends of cancers in adolescents and young adults (AYAs) ages 15 to 39 years were reexamined a decade after the US National Cancer Institute AYA Oncology Progress Review Group was established., Methods: Data from the Surveillance, Epidemiology, and End Results program through 2011 were used to ascertain incidence trends since the year 2000 of the 40 most frequent cancers in AYAs, including tumors with nonmalignant/noninvasive behavior., Results: Seven cancers in AYAs exhibited an overall increase in incidence; in 4, the annual percent change (APC) exceeded 3 (kidney, thyroid, uterus [corpus], and prostate cancer); whereas, in 3, the APC was between 0.7 and 1.4 (acute lymphoblastic leukemia and cancers of the colorectum and testis). Eight cancers exhibited statistically significant decreases in incidence among AYAs: Kaposi sarcoma (KS), fibromatous neoplasms, melanoma, and cancers of the anorectum, bladder, uterine cervix, esophagus, and lung, each with an APC less than -1. AYAs had a higher proportion of noninvasive tumors than either older or younger patients., Conclusions: An examination of cancer incidence patterns in AYAs observed over the recent decade reveal a complex pattern. Thyroid cancer by itself accounts for most of the overall increase and is likely caused by overdiagnosis. Reductions in cervix and lung cancer, melanoma, and KS can be attributed to successful national prevention programs. A higher proportion of noninvasive tumors in AYAs than in children and older adults indicates a need to revise the current system of classifying tumors in this population., (© 2016 American Cancer Society.)

Background: Existing comorbidity indices were not developed for adolescent and young adults (AYA) 15 to 39 years of age. The aim of this study was to assess impact of comorbidities on health care service needs and health status among AYA cancer survivors using the newly developed AYA HOPE comorbidity index in comparison with the existing indices., Methods: Data on comorbid conditions were obtained from medical records and service needs and health status were from a survey of AYA cancer survivors. Prevalence of comorbidities was based on the AYA HOPE index. Charlson and NCI indices were compared. Multivariable logistic regression was used., Results: Of the 485 patients, 14.6% had ≥2 comorbidities based on the AYA HOPE Index. Prevalence of mental illness and obesity/overweight, which were not included in existing indices, were 8.2% and 5.8%, respectively. Prevalence of cardiovascular, endocrine, gastrointestinal, and neurologic conditions were higher with the AYA HOPE Index than the other two indices. Forty percent of AYA patients reported service needs, particularly for mental health services (25.2%) and support groups (17.7%). Having ≥2 comorbidities on the AYA index was associated with higher mental health service needs [OR, 2.05; 95% confidence interval (CI), 1.10-3.82] adjusting for demographic and clinical factors. Comorbidities were associated with fair/poor self-reported health status., Conclusion: The AYA HOPE Index is a more comprehensive comorbidity index for AYA cancer patients than existing indices, and the number of comorbidities is associated with service needs and health status., Impact: The AYA HOPE index could identify patients' additional service needs early in therapy., (©2015 American Association for Cancer Research.)

Background: Late stage of cancer at diagnosis is an important predictor of cancer mortality. In many areas worldwide, cancer registry systems, available data and mapping technologies can provide information about late stage cancer by geographical regions, offering valuable opportunities to identify areas where further investigation and interventions are needed. The current study examined geographical variation in late stage breast cancer incidence across eight states in the United States with the objective to identify areas that might benefit from targeted interventions., Methods: Data from the Surveillance Epidemiology and End Results Program on late stage breast cancer incidence was used as dependent variable in regression analysis and certain factors known to contribute to high rates of late stage cancer (socioeconomic characteristics, health insurance characteristics, and the availability and utilization of cancer screening) as covariates. Geographic information systems were used to map and highlight areas that have any combination of high late stage breast cancer incidence and significantly associated risk factors., Results: The differences in mean rates of late stage breast cancer between eight states considered in this analysis are statistically significant. Factors that have statistically negative association with late stage breast cancer incidence across the eight states include: density of mammography facilities, percent population with Bachelor's degree and English literacy while percent black population has statistically significant positive association with late stage breast cancer incidence., Conclusions: This study describes geographic disparities in late stage breast cancer incidence and identifies areas that might benefit from targeted interventions. The results suggest that in the eight US states examined, higher rates of late stage breast cancer are more common in areas with predominantly black population, where English literacy, percentage of population with college degree and screening availability are low. The approach described in this work may be utilized both within and outside US, wherever cancer registry systems and technologies offer the same opportunity to identify places where further investigation and interventions for reducing cancer burden are needed.

Background: The fertility of adolescent and young adult (AYA) patients with cancer can be threatened by treatments, but to the authors' knowledge little is known regarding the extent to which providers discuss this with patients or recommend fertility preservation, or the patient and physician characteristics associated with these interactions., Methods: Questionnaires from 459 AYA patients with cancer who were diagnosed between 2007 and 2008 and recruited through 7 US population-based cancer registries were analyzed using sex-specific multivariable models. The authors assessed characteristics associated with not discussing therapy effects on fertility or fertility preservation options, and not making fertility preservation arrangements., Results: Males without a medical oncologist were more likely not to be told that therapy might affect fertility than those with a medical oncologist (male odds ratio [OR], 2.28; 95% confidence interval [95% CI], 1.03-5.00). Individuals without insurance (male OR, 2.91 [95% CI, 1.41-5.91] and female OR, 5.46 [95% CI, 1.59-18.72]); those raising children aged <18 years; and, among males only, those who received treatment posing no or a low fertility risk (OR, 3.39; 95% CI, 1.60-7.16) were more likely not to discuss fertility preservation with providers. Finally, among males, those without a college degree (OR, 1.98; 95% CI, 1.00-3.97), lacking private insurance (OR, 2.97; 95% CI, 1.16-7.63), and raising children aged <18 years (OR, 3.53; 95% CI, 1.63-7.65) were more likely to not make fertility preservation arrangements; too few females had made fertility preservation arrangements for similar analyses to be performed., Conclusions: Discussion and action surrounding fertility preservation for AYA patients with cancer are associated with medical factors, patient socioeconomic data, and child-rearing status. These results highlight the need for insurance coverage for fertility preservation and increased awareness of fertility preservation options., (© 2015 American Cancer Society.)

Purpose: Physicians play a critical role in delivering effective treatment and enabling successful transition to survivorship among adolescent and young adult (AYA) cancer patients. However, with no AYA cancer medical specialty, information on where and by whom AYAs with cancer are treated is limited., Methods: Using the National Cancer Institute's population-based AYA HOPE Study, 464 AYAs aged 15-39 at diagnosis treated by 903 physicians were identified. Differences in physician and hospital characteristics were examined by age at diagnosis and cancer type (germ cell cancer, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia [ALL], and sarcoma) using chi-square tests., Results: Treating physicians were predominately 51-64 years old, male, United States-trained in non-pediatric specialties, and in group practices within large metropolitan areas. Older patients were less often treated by pediatric physicians (p < 0.01) and more likely to be treated by United States-trained physicians without research/teaching responsibilities and in hospitals without residency programs (p < 0.05). The majority of the few pediatricians (n = 44) treated ALL patients. Physicians with research/teaching responsibilities and those based in medical schools were more likely to treat patients with ALL and sarcoma compared with other cancer types (p < 0.01). Of HL patients, 73% were treated at a cancer center compared with 56% of patients with germ cell cancer (p < 0.01), while ALL (85%) and sarcoma (87%) patients were more likely to be treated in hospitals with residency programs (p < 0.01)., Conclusions: Most AYAs with cancer were treated by non-pediatric physicians in community settings, although physician characteristics varied significantly by patient cancer type and age at diagnosis.

Purpose: Although the incidence and mortality of colon cancer in the United States has declined over the past two decades, blacks have worse outcomes than whites. Variations in treatment may contribute to mortality differentials., Methods: Patients diagnosed with stage III colon cancer were randomly sampled from the SEER program from the years 1990, 1991, 1995, 2000, 2005, and 2010. Patients were categorized as non-Hispanic white (n = 835) or black (n = 384). Treatment data were obtained from a review of the medical records, and these data were verified through contact with the original treating physicians. Log-binomial regression models were used to estimate the association between race and receipt of adjuvant chemotherapy. Effect modification by insurance was assessed with use of single referent models., Results: Receipt of adjuvant chemotherapy among both white and black patients increased from the period encompassing the years 1990 and 1991 (white, 58%; black, 45%) to the year 2005 (white, 72%; black, 71%) and then decreased in the year 2010 (white, 66%; black, 57%). There were marked racial disparities in the time period of 1990 to 1991 and again in 2010, with black patients less likely to receive adjuvant chemotherapy as compared with white patients (risk ratio [RR], .82; 95% CI, .72 to .93). For black patients, receipt of adjuvant chemotherapy did not differ across insurance categories (RR for private insurance, .80; 95% CI, .69 to .93; RR for Medicare, .84; 95% CI, .69 to 1.02; and RR for Medicaid, .84; 95% CI, .69 to 1.02), although a larger proportion had Medicaid in all years of the study as compared with white patients., Conclusion: The chemotherapy differential narrowed after the time period of 1990 to 1991, but our findings suggest that the disparity reemerged in 2010. Recent decreases in chemotherapy use may be due, in part, to the economic downturn and an increase in Medicaid coverage., (© 2015 by American Society of Clinical Oncology.)

Background: Colorectal cancer (CRC) mortality has declined in the United States, in part because of advances in treatment. Few studies have evaluated the adoption of therapies and temporal changes in patterns of care., Methods: Patients age 20 years and older diagnosed with stages II/III CRC were randomly sampled from the population-based Surveillance, Epidemiology, and End Results (SEER) program in 1990-1991, 1995, 2000, 2005, and 2010 (n = 7057). Therapy was obtained from medical records and physician verification. We described the receipt of chemotherapy and radiation therapy. Log-binomial regression was used to examine factors associated with therapy. All statistical tests were two-sided., Results: Chemotherapy receipt among colon cancer patients increased from 1990 (stage II: 22.5%; stage III: 56.3%) to 2005 (stage II: 32.1%; stage III: 72.4%) and declined slightly in 2010 (stage II: 29.3%; stage III: 66.4%). Stage III colon cancer patients who were older (vs <55 years, 75-79 years: risk ratio [RR] 0.81, 95% confidence interval [CI] = 0.71 to 0.91; ≥80 years: RR = 0.37, 95% CI = 0.28 to 0.47) or had a comorbidity score of 2 or higher (vs 0, RR = 0.56, 95% CI = 0.35 to 0.87) received chemotherapy less often. Receipt of radiation therapy by rectal cancer patients increased across all years from 45.5% to 66.1%. Increasing age (vs <55 years, 75-79 years: RR = 0.59, 95% CI = 0.47 to 0.74; ≥80 years: RR = 0.33, 95% CI = 0.25 to 0.45) was associated with lower chemoradiation use among stage II/III rectal cancer patients., Conclusion: Our findings demonstrate increased adoption of chemotherapy and radiation therapy for colon and rectal cancer patients and differences in therapy by age, comorbidity, and diagnosis year. Increased receipt of these therapies in the community may further reduce CRC mortality., (© The Author 2015. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.)

Objectives: The National Cancer Institute (NCI) annually confirms therapy with treating physicians on a sample of patients diagnosed with a specific cancer., Methods: Using the NCI Patterns of Care data, treatment patterns were examined on a population-based sample of patients diagnosed with gastrointestinal stromal tumors (GIST) in 2008., Results: A random sample of 323 of 405 GIST patients registered in SEER was selected. Most patients had gastric GISTs, were ≥ 65 years, white, had private insurance, and treated in a hospital with a residency program. Surgery was primarily performed in patients with non-metastatic disease (94%), in which: 26, 12, and 36% were at low, intermediate, and high-risk of recurrence, respectively. Amongst low-risk patients, ∼ 30% received adjuvant therapy. Amongst patients at higher risk, 26-40% did not receive adjuvant therapy. Imatinib was the most common targeted therapy administered. On multivariate analysis, age and risk-group were associated with receipt of adjuvant targeted therapy., Conclusions: Our study shows that in 2008, the majority of patients diagnosed with GIST received appropriate surgical and adjuvant therapies. However, a considerable subset may have been overtreated and undertreated. Future studies identifying factors that impact the delivery of adjuvant therapy should be conducted., (© 2015 Wiley Periodicals, Inc.)

The 21-gene recurrence score (RS) assay (Oncotype DX™) predicts the likelihood of breast cancer recurrence and chemotherapy responsiveness. The aims of this study were to describe temporal trends in assay usage, to investigate factors associated with the receipt of the assay and to determine how the assay is associated with treatment decisions. Random samples of stage I-II female breast cancer patients diagnosed in 2004, 2005 and 2010 as reported to the National Cancer Institute's Surveillance Epidemiology and End Results program were included. Among women diagnosed in 2010 with estrogen receptor positive (ER+), lymph node-negative (LN-) tumors, factors associated with receipt of the assay were identified and the likelihood of chemotherapy by RS was estimated. Assay usage increased over time (ER+/LN-:8.0-27.0 %, p < 0.01; ER+/LN+: 2.0-15.7 %, p = 0.09; ER-: 0.2-1.7 %, p < 0.01) from 2005 to 2010. Receipt of the assay was associated with younger age, lower area income and tumor characteristics. Among women in the low (RS < 18) and high risk (RS > 30) categories, 3.3 and 95.9 % received chemotherapy, respectively. Within the intermediate risk group the receipt of chemotherapy varied: 12.8 % (RS: 18-19), 35.0 % (RS: 20-23) and 84.0 % (RS: 24-30). During the study years, assay usage increased among women for whom the assay is and is not guideline recommended. Factors such as insurance and race/ethnicity do not appear to be associated with the receipt of the assay. The RS, as determined broadly via three categories and within the intermediate risk group, does appear to influence chemotherapy decisions.

Background and Aims: Hepatocellular carcinoma (HCC) incidence is expected to rise dramatically over the next decades because of increasing hepatitis C infections and obesity-related comorbidities. However, little information exists regarding the treatment of patients with HCC in the community setting. The purpose of this article was to characterize patterns of diagnosis, treatment, and survival for HCC in the community., Methods: We identified 946 HCC patients in the 2007 National Cancer Institute's Patterns of Care study. Chi-square analyses and multivariable regression were used to examine patient and provider factors associated with treatment and survival by stage at diagnosis., Results: Our primary findings indicate that liver transplants, embolization, or radiofrequency ablation for Barcelona Clinic Liver Cancer stage A patients were performed significantly less often for non-Hispanic blacks, Hispanics, patients in the highest income quartile, and patients with Medicaid. Patients with stage D disease were less likely to receive cancer therapy if they had Medicaid insurance compared to private insurance (p<0.001 for all). In multivariable analyses, all-cause mortality was associated with treatment in a hospital without a residency training program (hazard ratio [HR] 1.4 [1.1,1.9]), more advanced stage (HR: 10.6 [5.7, 19.5] stage D vs. A), and lack of appropriate treatment (HR: 2.4 [1.9,3.2])., Conclusions: This is the first population-based study to evaluate therapy provided for HCC in the community. Current therapy depended on patients' HCC stage at diagnosis and other clinical and demographic factors. Overall, our study identifies those least likely to receive specific therapies in a variety of health care settings and can inform strategies for promoting appropriate therapy now and as new agents are developed.

Purpose: Despite decades of research, consensus on optimal treatment for pancreatic cancer has not been reached and survival remains bleak. This study aimed to evaluate predictors of treatment and survival among patients treated in community settings., Methods: A sample of pancreatic cancer patients who were diagnosed in 2009 and reported to the National Cancer Institute's Surveillance Epidemiology and End Results (SEER) program (n = 977) was included. Logistic regression was used to assess factors associated with therapy modality. Survival was examined using the Kaplan-Meier method and Cox proportional hazards regression. All analyses were conducted stratified by tumor stage., Results: Among stages I-II patients, 27 % received no treatment and only 47 % received surgery. Among these patients, no treatment was associated with older age, being a woman, not being married, lower income, and larger or unknown tumor size. Additionally, the type of adjuvant therapy received varied by tumor characteristics, race/ethnicity, and socioeconomic status. The most common therapies for stage III tumors were chemoradiation (40.8 %) and chemotherapy (21.9 %) alone. Half of stage IV patients received chemotherapy; chemotherapy was less common in patients who were older, in a minority race/ethnicity, and not married. Although treatment was associated with better prognosis, even among stages I-II patients who underwent surgery, a quarter succumbed to their disease within 17 months., Conclusion: A significant proportion of pancreatic cancer patients remain undertreated primarily due to nonclinical factors, including marital status. Further investigating what aspects of marriage are contributing to this association will provide a better understanding of pancreatic cancer treatment barriers.

Purpose: Medicare beneficiaries with cancer bear a greater portion of their health care costs, because cancer treatment costs have increased. Beneficiaries have supplemental insurance to reduce out-of-pocket costs; those without supplemental insurance may face barriers to care. This study examines the association between type of supplemental insurance coverage and receipt of chemotherapy among Medicare patients with cancer who, per National Comprehensive Cancer Network treatment guidelines, should generally receive chemotherapy., Patients and Methods: This retrospective, observational study included 1,200 Medicare patients diagnosed with incident cancer of the breast (stage IIB to III), colon (stage III), rectum (stage II to III), lung (stage II to IV), or ovary (stage II to IV) from 2000 to 2005. Using the National Cancer Institute Patterns of Care Studies and linked SEER-Medicare data, we determined each Medicare patient's supplemental insurance status (private insurance, dual eligible [ie, Medicare with Medicaid], or no supplemental insurance), consultation with an oncologist, and receipt of chemotherapy. Using adjusted logistic regression, we evaluated the association of type of supplemental insurance with oncologist consultation and receipt of chemotherapy., Results: Dual-eligible patients were significantly less likely to receive chemotherapy than were Medicare patients with private insurance. Patients with Medicare only who saw an oncologist had comparable rates of chemotherapy compared with Medicare patients with private insurance., Conclusion: Dual-eligible Medicare beneficiaries received recommended cancer chemotherapy less frequently than other Medicare beneficiaries. With the increasing number of Medicaid patients under the Affordable Care Act, there will be a need for patient navigators and sufficient physician reimbursement so that low-income patients with cancer will have access to oncologists and needed treatment., (© 2014 by American Society of Clinical Oncology.)

Introduction: Thyroid cancer incidence is rising in the United States. Although overall thyroid cancer survival is high, prognostic stratification schemes have been developed to better delineate patients with poor prognoses., Methods: A random sample that included 1,003 adult papillary thyroid cancer patients diagnosed in 2006 and reported to the National Cancer Institute's Surveillance Epidemiology and End Results (SEER) program had their medical records re-abstracted and additional risk factor data collected. The distribution of patient demographics, medical histories, tumor characteristics and treatment modalities were assessed. Logistic regression was used to assess factors associated with total thyroidectomy (total, subtotal or near total) and radioiodine therapy. All analyses were conducted stratified by the Age, Metastases, Extent and Size (AMES) low/high-risk classification., Results: Receipt of total thyroidectomy was associated with family history of thyroid disease/cancer and larger tumor size among low-risk patients and smaller tumor size among high-risk patients. Among low-risk patients, the receipt of radioiodine was associated with family history of thyroid disease/cancer, larger tumor size, total thyroidectomy, and positive lymph nodes. Among high-risk patients, the receipt of radioiodine was associated with intermediate tumor and hospital sizes., Conclusions: This study provides insight into the patterns of papillary thyroid cancer care in the general population. The findings from this study indicate adherence to guideline recommendations in that family history of thyroid disease/cancer, in addition to tumor characteristics, does appear to inform treatment practices, especially among low-risk patients.

Few US studies have examined patterns of care (POC) for acute myeloid leukemia (AML) in community settings. We examined treatment and survival in 978 adults with AML sampled from Surveillance, Epidemiology, and End Results (SEER) registries through the POC program. Logistic regression was used to evaluate the association between patient/hospital characteristics and receipt of chemotherapy and allogeneic transplant. Survival was examined using proportional hazards models. Treatment with cytarabine/anthracycline occurred in > 80% of patients without acute promeyelocytic leukemia (non-APL) < 60, but only about one-third of older non-APL patients. Ultimately, 27% of those < 60 received an allogeneic transplant. Thirty-seven percent of those < 40 and 4% of those ≥ 80 were alive at the end of follow-up. About three-quarters of patients with APL received all-trans retinoic acid (ATRA) and either an anthracycline or arsenic trioxide, with 71% surviving. Age and APL diagnosis were the strongest predictors of treatment and survival. Trends in dissemination of novel diagnostic tests and treatments and in survival will be monitored by POC in future years.

Background: There has been little improvement in the survival of adolescent and young adult (AYA) cancer patients aged 15 to 39 years relative to other age groups, raising the question of whether such patients receive appropriate initial treatment., Methods: We examined receipt of initial cancer treatment for a population-based sample of 504 AYAs diagnosed in 2007-2008 with acute lymphoblastic leukemia (ALL), Hodgkin's or non-Hodgkin's lymphoma, germ cell cancer, or sarcoma. Registry data, patient surveys, and detailed medical record reviews were used to evaluate the association of patient demographic, socioeconomic, and health care setting characteristics with receipt of appropriate initial treatment, which was defined by clinical specialists in AYA oncology based on adult guidelines and published literature available before 2009 and analyzed with multivariable logistic regression. All statistical tests were two-sided., Results: Approximately 75% of AYA cancer patients in our sample received appropriate treatment, 68% after excluding stage I male germ cell patients who all received appropriate treatment. After this exclusion, appropriate treatment ranged from 79% of sarcoma patients to 56% of ALL patients. Cancer type (P < .01) and clinical trial participation (P = .04) were statistically significantly associated with appropriate treatment in multivariable analyses. Patients enrolled in clinical trials were more likely to receive appropriate therapy relative to those not enrolled (78% vs 67%, adjusted odds ratio = 2.6, 95% confidence interval = 1.1 to 6.4)., Conclusions: Except for those with early stage male germ cell tumors, approximately 30% (or 3 in 10) AYA cancer patients did not receive appropriate therapy. Further investigation is required to understand the reasons for this potential shortfall in care delivery., (© The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.)

Several new agents have become available to treat renal cell cancer (RCC) in recent years, although evidence on their dissemination is limited. This study examined recent trends in RCC treatment in US community practices. Data from the population-based National Cancer Institute's Patterns of Care studies were used to evaluate treatment of patients with RCC newly diagnosed in 2004 and 2009 (N=2357). Descriptive statistics and logistic and Cox proportional hazards regression analyses were used to assess treatment patterns and the associations among demographic, clinical, and hospital characteristics, with receipt of systemic therapy and time-to-systemic treatment. Between 2004 and 2009, systemic therapy use increased among patients with stage III and IV RCC, from 3.8% to 15.7% and 35.2% to 57.4%, respectively. Among patients with stage IV disease, the most commonly used therapies changed from interleukin-2 (16.3%) and interferon-alfa (16.6%) in 2004 to sunitinib (39.2%) and temsirolimus (15.2%) in 2009. Further, notable decreases were seen in the use of surgery and time-to-systemic treatment for patients with stage IV disease. Patients who were older, living in areas with lower educational attainment, and diagnosed in 2004 were significantly less likely to receive systemic therapy and had longer time-to-systemic treatment (P<.05). The findings indicate that over the past decade, treatment for RCC in the United States has evolved toward increased use of systemic therapy. As the diffusion of new therapies continues, it will be imperative to understand how variation in care for RCC will impact health outcomes and costs of care., (Copyright © 2014 by the National Comprehensive Cancer Network.)

Background: Young adults have historically been the least likely to have health insurance in the United States. Previous studies of survivors of childhood cancer found lower rates of insurance and less access to medical care compared with siblings; however, to the authors' knowledge, no studies to date have examined continuity of insurance after a cancer diagnosis in adolescents and young adults (AYAs)., Methods: Using the AYA Health Outcomes and Patient Experience study, a cohort of 465 individuals aged 15 to 39 years from participating Surveillance, Epidemiology, and End Results registries, we evaluated changes in and sponsors of health insurance coverage after diagnosis, coverage of physician-recommended tests, and factors associated with lack of insurance after a cancer diagnosis using chi-square tests and multivariable logistic regression., Results: Greater than 25% of AYA survivors of cancer (118 survivors) experienced some period without insurance up to 35 months after diagnosis. Insurance rates were high in the initial year after diagnosis (6 months-14 months; 93.3%) but decreased substantially at follow-up (15 months-35 months; 85.2%). The most common sponsor of health insurance was employer/school coverage (43.7%). Multivariable analysis indicated that older survivors (those aged 25-39 years vs 15-19 years; odds ratio, 3.35 [P < .01]) and those with less education (high school or less vs college graduate; odds ratio, 2.80 [P < .01]) were more likely to experience a period without insurance after diagnosis. Furthermore, > 20% of survivors indicated there were physician-recommended tests/treatments that were not covered by insurance, but > 80% received them regardless of coverage., Conclusions: Insurance rates appear to decrease with time since diagnosis in AYA survivors of cancer. Future studies should examine how new policies under the Patient Protection and Affordable Care Act extend access and insurance coverage beyond initial treatment., (© 2014 American Cancer Society. This article has been contributed to by US Government employees and their work is in the public domain in the USA.)

Purpose: Adolescent and young adult (AYA) cancer survivors experience barriers to utilizing healthcare, but the determinants of cancer-related medical care of AYAs has not been fully explored., Methods: We studied factors associated with medical care utilization among 465 AYA cancer survivors in the AYA Health Outcomes and Patient Experience Study, a cohort of 15 to 39 year olds recently diagnosed with germ cell cancer, lymphoma, sarcoma, or acute lymphocytic leukemia. Descriptive statistics and multivariate logistic regression methods were used., Results: Most AYA cancer survivors (95%), who were 15-35 months post diagnosis, received medical care in the past 12 months and 17% were undergoing cancer treatment. In multivariate analyses, compared with AYAs with no cancer-related medical visits in the previous year, AYAs receiving cancer-related care were more likely to currently have health insurance (odds ratio (OR) = 4.9; 95% confidence interval (CI) = 1.7-13.8) or have had health insurance in the past year (OR = 4.0; 95% CI = 0.99-16.3). Cancer recurrence, lacking employment, and negative changes in self-reported general health were associated with ongoing cancer treatment versus other cancer-related medical care. Eleven percent of all AYAs and 25% of AYAs who did not receive medical care in the past 12 months lost health insurance between the initial and follow-up surveys., Conclusion: AYA cancer survivors with health insurance were much more likely to receive cancer-related medical care than those without insurance., Implications for Cancer Survivors: Despite the need for post-treatment medical care, lacking health insurance is a barrier to receiving any medical care among AYAs.

Purpose: Small cell lung cancer (SCLC) historically has had poor prognosis. Clinical trials have demonstrated improved survival among patients receiving standard platinum-/etoposide-based chemotherapy. Whereas treatment patterns and outcomes have been evaluated for patients with SCLC in clinical trials, population-based practice patterns are not well known., Methods: The National Cancer Institute's Patterns of Care study was used to evaluate patient and provider factors associated with standard treatment, clinical trial enrollment, and 12-month relative hazard of death., Results: Among 931 patients with SCLC diagnosed in 2007 in academic and community settings, 72.2% of patients with limited-stage (LS) disease received chemoradiation and 42.2% of patients with extensive-stage (ES) disease received chemotherapy only; the expected treatment scenarios by stage. Less than 1% of the patients enrolled in clinical trials and 2.1% of the patients with LS disease and 3.4% of the patients with ES disease refused any type of treatment. Patients 80 years or older at diagnosis and those with pneumonia/lung collapse were less likely to receive chemoradiation for LS disease. Patients treated in hospitals with residency programs were more likely to receive chemotherapy for ES disease, and patients 80 years or older were less likely to receive chemotherapy for ES disease. Finally, female patients with LS disease, black patients with ES disease, and all patients who received chemotherapy compared to receiving radiation alone or no therapy experienced significantly lower mortality., Discussion: Despite the demonstrated lower mortality, a relatively large proportion of patients with SCLC are not treated with a standard treatment regimen. Future studies should evaluate efforts to promote use of appropriate treatment regimens and encourage clinical trial participation.

Purpose: Despite improved outcomes for multiple myeloma, little is known about changes in initial treatment at the population level for US patients. We report trends in treatment practices., Patients and Methods: Patients (n = 1,976) with newly diagnosed myeloma in 1999, 2003, and 2007 were examined by using the National Cancer Institute's Patterns of Care Studies. We assessed use of common chemotherapies (melphalan, vincristine, and doxorubicin), novel agents (thalidomide, bortezomib, or lenalidomide), or hematopoietic stem-cell transplantation (HSCT) during the first year after diagnosis. By using logistic regression, we evaluated the association of race and insurance status with receipt of high-cost treatments--transplantation or novel agents., Results: From 1999 to 2007, use of melphalan alone dropped from 32.0% to 4.1%, and vincristine and doxorubicin use declined from 18.2% to 0.4%. The percentage of patients receiving any novel agent rose from 3.9% in 1999 to 75.5% in 2007. HSCT increased from 11.1% in 1999 to 21.7% in 2007. For white patients, use of novel agents was lower for those with Medicare only (42.6%) than for those with private insurance (50.2%). For patients of other races, those with Medicare only or Medicaid were less likely to receive novel agents or transplantation compared with those with private insurance., Conclusion: Initial treatment for multiple myeloma has changed markedly. Most patients now receive novel agents, with a decline in the use of traditional chemotherapy. Use of transplantation and novel agents varies with race and insurance. These findings document rapid changes in patterns of care and highlight addressable disparities in myeloma care.

Purpose: Limited research exists on the social information needs of adolescents and young adults (AYAs, aged 15-39 at diagnosis) with cancer., Methods: The Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) Study recruited 523 patients to complete surveys 6-14 months after cancer diagnosis. Participants reported information needs for talking about their cancer experience with family and friends ( TAC ) and meeting peer survivors ( MPS ). Multiple logistic regression was used to examine factors associated with each need., Results: Approximately 25% (118/477) and 43% (199/462) of participants reported a TAC or MPS need respectively. Participants in their 20s (vs. teenagers) were more likely to report a MPS need ( p =0.03). Hispanics (vs. non-Hispanic whites) were more likely to report a TAC need ( p =0.01). Individuals who did not receive but reported needing support groups were about 4 and 13 times as likely to report TAC and MPS needs respectively ( p <0.05). Participants reporting high symptom burden were more likely to report TAC and MPS needs ( p <0.01), and those reporting fair/poor quality of care were more likely to report a TAC need ( p <0.01). Those reporting that cancer had an impact on several key relationships with family and friends were more likely to report social information needs., Conclusion: Social information needs are higher in AYAs diagnosed in their 20s, in Hispanics, among those reporting high symptom burden and/or lower quality of care, and in individuals not in support groups. Efforts should be made to develop interventions for AYAs in most need of social information and support.

Background: Large health care databases are increasingly used to examine the dissemination and benefits and harms of chemotherapy treatment in routine practice, particularly among patients excluded from trials (eg, the elderly). Misclassification of chemotherapy could bias estimates of frequency and association, warranting an updated assessment., Methods: We evaluated the validity of Medicare claims to identify receipt of chemotherapy and specific agents delivered to elderly stage II/III colorectal (CRC), in situ/early-stage breast, non-small-cell lung, and ovarian cancer patients using the National Cancer Institute's Patterns of Care studies (POC) as the gold standard. The POC collected data on chemotherapy treatment by reabstracting hospital records, contacting physicians, and reviewing medical records. Patients' POC data were linked and compared with their Medicare claims for 2 to 12 months postdiagnosis. κ, sensitivity, specificity, positive and negative predictive values and 95% confidence intervals were calculated for the receipt of any chemotherapy and specific agents., Results: Sensitivity and specificity of Medicare claims to identify any chemotherapy were high across all cancer sites. We found substantial variation in validity across agents, by site and administration modality. Capecitabine, an oral CRC treatment, was identified in claims with high specificity (98%) but low sensitivity (47%), whereas oxaliplatin, an intravenously administered CRC agent had higher sensitivity (75%) and similar specificity (97%)., Conclusions: Receipt of chemotherapy and specific intravenous agents can be identified using Medicare claims, showing improvement from prior reports; yet, variation exists. Future studies should assess newly approved agents and the impact of coverage decisions for these agents under the Medicare Part D program.

Colorectal cancer is the third most common cancer in the United States and Canada. Given the high incidence and increased survival of colorectal cancer patients, prevalence is increasing over time in both countries. Using MEDLINE, we conducted a systematic review of the literature published between 2000 and 2010 to describe patterns of colorectal cancer care. Specifically we examined data sources used to obtain treatment information and compared patterns of cancer-directed initial care, post-diagnostic surveillance care, and end-of-life care among colorectal cancer patients diagnosed in the United States and Canada. Receipt of initial treatment for colorectal cancer was associated with the anatomical position of the tumor and extent of disease at diagnosis, in accordance with consensus-based guidelines. Overall, care trends were similar between the United States and Canada; however, we observed differences with respect to data sources used to measure treatment receipt. Differences were also present between study populations within country, further limiting direct comparisons. Findings from this review will allow researchers, clinicians, and policy makers to evaluate treatment receipt by patient, clinical, or system characteristics and identify emerging trends over time. Furthermore, comparisons between health-care systems in the United States and Canada can identify disparities in care, allow the evaluation of different models of care, and highlight issues regarding the utility of existing data sources to estimate national patterns of care.

Colorectal cancer is the second most common cancer in women and the third most common in men worldwide. In this study, we used MEDLINE to conduct a systematic review of existing literature published in English between 2000 and 2010 on patterns of colorectal cancer care. Specifically, this review examined 66 studies conducted in Europe, Australia, and New Zealand to assess patterns of initial care, post-diagnostic surveillance, and end-of-life care for colorectal cancer. The majority of studies in this review reported rates of initial care, and limited research examined either post-diagnostic surveillance or end-of-life care for colorectal cancer. Older colorectal cancer patients and individuals with comorbidities generally received less surgery, chemotherapy, or radiotherapy. Patients with lower socioeconomic status were less likely to receive treatment, and variations in patterns of care were observed by patient demographic and clinical characteristics, geographical location, and hospital setting. However, there was wide variability in data collection and measures, health-care systems, patient populations, and population representativeness, making direct comparisons challenging. Future research and policy efforts should emphasize increased comparability of data systems, promote data standardization, and encourage collaboration between and within European cancer registries and administrative databases.

Background: The objective of this study was to examine patterns of care and survival in a population-based sample of patients with head and neck cancer (HNC) who were treated in the community or in hospitals that had residency training programs., Methods: Data from the National Cancer Institute's Surveillance, Epidemiology, and End Results Program were used to sample 1317 patients aged ≥20 years with invasive squamous HNC who were diagnosed during 2004 and who had vital status available through 2008., Results: Treatment and survival were influenced by tumor site and disease stage. Patients who had stage I/II cancer of the oral cavity generally underwent surgery; patients with stage III oral cavity disease underwent surgery and received radiation; and patients with stage IV oral cavity disease underwent surgery and received chemoradiation. Patients with early stage cancer of the oropharynx either underwent surgery or received radiation and chemotherapy, and patients with late/unstaged oropharyngeal disease primarily received radiation and chemotherapy. Patients with early stage cancer of the larynx mainly received radiation alone, and patients with late stage laryngeal disease generally received chemoradiation. Cisplatin-based regimens were used most frequently. Overall, taxanes were used in 32% of regimens, and cetuximab was used in <3% of regimens. Patients aged ≥50 years, those with a Charlson comorbidity score ≥1, those with stage IV disease, and those with cancer located in the oral cavity or larynx had poorer survival. Although facilities with residency training programs treated more black patients and more patients with late stage disease, when adjusted for other factors, survival rates were similar to those reported in facilities with no such programs., Conclusions: Therapy generally followed accepted standards for 2004. Findings in particular tumor sites and stages may reflect the variability that still exists for the treatment of HNC. The use of taxanes and cetuximab is expected to increase based on new evidence of benefit. Reducing treatment-related toxicities and long-term functional deficits will be critical and especially important with the increase in human papillomavirus-related cancers. In addition, further attempts to improve survival for older patients are needed., (Copyright © 2011 American Cancer Society.)

Purpose: To examine the impact of cancer on work and education in a sample of adolescent and young adult (AYA) patients with cancer., Patients and Methods: By using the Adolescent and Young Adult Health Outcomes and Patient Experience Study (AYA HOPE)-a cohort of 463 recently diagnosed patients age 15 to 39 years with germ cell cancer, Hodgkin's lymphoma, non-Hodgkin's lymphoma, sarcoma, and acute lymphocytic leukemia from participating Surveillance, Epidemiology, and End Results (SEER) cancer registries-we evaluated factors associated with return to work/school after cancer diagnosis, a belief that cancer had a negative impact on plans for work/school, and reported problems with work/school after diagnosis by using descriptive statistics, χ(2) tests, and multivariate logistic regression., Results: More than 72% (282 of 388) of patients working or in school full-time before diagnosis had returned to full-time work or school 15 to 35 months postdiagnosis compared with 34% (14 of 41) of previously part-time workers/students, 7% (one of 14) of homemakers, and 25% (five of 20) of unemployed/disabled patients (P < .001). Among full-time workers/students before diagnosis, patients who were uninsured (odds ratio [OR], 0.21; 95% CI, 0.07 to 0.67; no insurance v employer-/school-sponsored insurance) or quit working directly after diagnosis (OR, 0.15; 95% CI, 0.06 to 0.37; quit v no change) were least likely to return. Very intensive cancer treatment and quitting work/school were associated with a belief that cancer negatively influenced plans for work/school. Finally, more than 50% of full-time workers/students reported problems with work/studies after diagnosis., Conclusion: Although most AYA patients with cancer return to work after cancer, treatment intensity, not having insurance, and quitting work/school directly after diagnosis can influence work/educational outcomes. Future research should investigate underlying causes for these differences and best practices for effective transition of these cancer survivors to the workplace/school after treatment.

Background: Clinical guidelines recommend that women with hormone-receptor positive breast cancer receive endocrine therapy (selective estrogen receptor modulators [SERMs] or aromatase inhibitors [AIs]) for five years following diagnosis., Objective: To examine utilization and adherence to therapy for SERMs and AIs in Medicare Part D prescription drug plans., Data: Linked Surveillance, Epidemiology, and End Results (SEER)-Medicare data., Study Design: We identified 15,542 elderly women diagnosed with hormone-receptor positive breast cancer in years 2003-2005 (the latest SEER data at the time of the study) and enrolled in a Part D plan in 2006 or 2007 (the initial years of Part D). This permitted us to compare utilization and adherence to therapy at various points within the recommended five-year timeframe for endocrine therapy. SERM and AI use was measured from claim records. Non-adherence to therapy was defined as a medication possession ratio of less than 80 percent., Principal Findings: Between May 2006 and December 2007, 22 percent of beneficiaries received SERM, 52 percent AI, and 26 percent received neither. The percent receiving any endocrine therapy decreased with time from diagnosis. Among SERM and AI users, 20-30 percent were non-adherent to therapy; out-of-pocket costs were higher for AI than SERM and were strongly associated with non-adherence. For AI users without a low income subsidy, adherence to therapy deteriorated after reaching the Part D coverage gap., Conclusions: Many elderly breast cancer patients were not receiving therapy for the recommended five years following diagnosis. Choosing a Part D plan that minimizes out-of-pocket costs is critical to ensuring beneficiary access to essential medications., (Public Domain.)