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List of specific conditions in the AYA HOPE comorbidity index

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. Cancer Epidemiol Biomarkers Prev; 24(12); 1844–9. ©2015 AACR.

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.

Adolescent and young adult (AYA) cancer patients are underrepresented in clinical trials, but the reasons for this phenomenon are unknown. 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. 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. 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.

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.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.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.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 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.

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.

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.

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.

Historically, adolescents and young adults (AYA) diagnosed with cancer have been an understudied population, and their unique care experiences, needs, and outcomes were not well understood. Thus, 10 years ago, the National Cancer Institute supported the fielding of the Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) study to address this gap. We recruited individuals diagnosed at ages 15 to 39 with germ cell, Hodgkin and non-Hodgkin lymphoma, acute lymphoblastic leukemia, and sarcoma from Surveillance, Epidemiology, and End Results cancer registries into the first multicenter population-based study of medical care, physical, and mental health outcomes for AYAs with cancer in the United States. This review of the 17 published manuscripts showed low awareness of clinical trials and substantial impact of cancer on financial burden, education and work, relationships and family planning, and physical and mental health. It highlights the feasibility of a longitudinal population-based study and key lessons learned for research on AYAs with cancer in and beyond the United States.

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.

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.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.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.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.

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. Cancer Epidemiol Biomarkers Prev; 24(12); 1844–9. ©2015 AACR.

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.

Author(s): Shnorhavorian, Margarett; Harlan, Linda C; Smith, Ashley Wilder; Keegan, Theresa HM; Lynch, Charles F; Prasad, Pinki K; Cress, Rosemary D; Wu, Xiao-Cheng; Hamilton, Ann S; Parsons, Helen M; Keel, Gretchen; Charlesworth, Sarah E; Schwartz, Stephen M; AYA HOPE Study Collaborative Group | Abstract: BackgroundThe 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.MethodsQuestionnaires 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.ResultsMales 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 l18 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 l18 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.ConclusionsDiscussion 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.

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. J. Surg. Oncol. 2015 111:702–707. © 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 %, p0.01; ER+/LN+: 2.0-15.7 %, p = 0.09; ER-: 0.2-1.7 %, p0.01) from 2005 to 2010. Receipt of the assay was associated with younger age, lower area income and tumor characteristics. Among women in the low (RS18) and high risk (RS30) 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.

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. 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. 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). 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.

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 (pConclusions: 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.

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. 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. 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. 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.

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

Author(s): Parsons, Helen M; Schmidt, Susanne; Harlan, Linda C; Kent, Erin E; Lynch, Charles F; Smith, Ashley W; Keegan, Theresa HM; AYA HOPE Collaborative | Abstract: BackgroundYoung 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).MethodsUsing 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.ResultsGreater 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 l .01]) and those with less education (high school or less vs college graduate; odds ratio, 2.80 [P l .01]) were more likely to experience a period without insurance after diagnosis. Furthermore, g 20% of survivors indicated there were physician-recommended tests/treatments that were not covered by insurance, but g 80% received them regardless of coverage.ConclusionsInsurance 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.

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 in80% of patients without acute promeyelocytic leukemia (non-APL)60, but only about one-third of older non-APL patients. Ultimately, 27% of those60 received an allogeneic transplant. Thirty-seven percent of those40 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.

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.

In 2008, an estimated 2.1 million individuals were diagnosed with colorectal cancer worldwide, with nearly 60% residing in developed regions (1,2). Globally, colorectal cancer is the second most common cancer in women and third in men (1,2). Although rates vary significantly by regions of the world, Australia/New Zealand and Western Europe have among the highest estimated incidence rates of colorectal cancer (1,2). For both genders, Central and Eastern Europe have the highest mortality rates because of colorectal cancer worldwide (1,2). Given that the likelihood of developing colorectal cancer increases with older age, global prevalence is rising over time because of growing proportions of elderly (1,2). Better methods of screening and early detection and advances in treatment are also improving survival, further contributing to increasing prevalence (1,2). Undoubtedly, these increases have significant implications for health-care costs, delivery, and service utilization associated with this disease. Given high rates of mortality and incidence for colorectal cancer in certain parts of Europe, this region of the world is an important area of international focus. Available comparative research on cancer in European countries has primarily come from studies conducted by EUROCARE, a research collaboration between several European population-based cancer registries that began in 1990 (3). EUROCARE was designed to develop standardized measures for improved comparability of cancer data between European countries and explore trends in patterns of cancer treatment and survival (3). Findings from these studies have demonstrated considerable variation in age-adjusted 5-year survival by country and region, with the highest colorectal cancer survival rates in northern European countries and the lowest in Eastern European countries (4–9). A study comparing colorectal cancer survival in Europe to the United States during the period of 1985–1989 found that 5-year survival ranged from 13% to 22% higher in the United States depending upon tumor subsite (10). Verdecchia et al. compared data from 47 European registries to data from Surveillance, Epidemiology, and End Results (SEER) and noted higher mean survival in the United States compared with Europe for multiple cancers, including colorectal cancer, for patients diagnosed in 1995–1999 and followed up to December 2003 (7). Although limited, existing studies have suggested that differences in stage at diagnosis, postoperative mortality, and access to care may be factors that partially explain variations in outcomes between European nations (11–13). With the larger goal of improving delivery of population-based care for colorectal cancer, assessment of current practices is a necessary first step. Therefore, we conducted this systematic review of published studies to evaluate patterns of initial care following diagnosis, post-diagnostic surveillance, and end-of-life care for colorectal cancer in Europe, Australia, and New Zealand. Examination of this literature will provide a deeper understanding of care patterns and trends over time and may identify disparities in treatment. Assessment of data comparability between nations can also inform data collection and in combination with patient outcomes and cost data, assist resource allocation, health-care delivery, and research and policy efforts targeting colorectal cancer treatment.

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

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, χ2 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: 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

We examined trends in the treatment and survival in a population-based sample of white patients diagnosed with local-stage and regional-stage cutaneous melanoma in 1995, 1996, or 2001, treated in communities across the USA with vital status follow-up through 2007. White patients, aged 20 years or older with invasive cutaneous melanoma, were identified from the Surveillance, Epidemiology and End-Results population-based registries. Hospital and pathology records were reabstracted and physicians were asked to verify the provided therapy. The percentage of patients receiving lymph node biopsies increased over time. Sentinel lymph node biopsy increased between 1995 and 2001 from 5 to 32% for men and from 9 to 35% for women. The use of chemotherapy, hormonal therapy, and immunotherapy changed little. Facilities with approved residency training programs were more likely to perform lymph node dissections, to perform sentinel lymph node biopsy, and to treat patients more aggressively than were facilities without such programs. Men were significantly more likely than women to die of cutaneous melanoma. In multivariable survival analysis, after adjusting for age, Charlson score, and surgical margins, survival did not change significantly over this time. Deaths were associated with increasing tumor thickness for men and women. Surgical treatment of local or regional melanoma became more extensive over time with fewer local excisions and more lymph node dissections, but with little change in adjuvant therapy. Survival was associated with tumor thickness. Early detection when the tumor thickness is less may decrease mortality. Future research should especially target decreasing the disparity in survival between men and women.

Purpose Because adolescent and young adult (AYA) patients with cancer have experienced variable improvement in survival over the past two decades, enhancing the quality and timeliness of cancer care in this population has emerged as a priority area. To identify current trends in AYA care, we examined patterns of clinical trial participation, time to treatment, and provider characteristics in a population-based sample of AYA patients with cancer. Methods Using the National Cancer Institute Patterns of Care Study, we used multivariate logistic regression to evaluate demographic and provider characteristics associated with clinical trial enrollment and time to treatment among 1,358 AYA patients with cancer (age 15 to 39 years) identified through the Surveillance, Epidemiology, and End Results Program. Results In our study, 14% of patients age 15 to 39 years had enrolled onto a clinical trial; participation varied by type of cancer, with the highest participation in those diagnosed with acute lymphoblastic leukemia (37%) and sarcoma (32%). Multivariate analyses demonstrated that uninsured, older patients and those treated by nonpediatric oncologists were less likely to enroll onto clinical trials. Median time from pathologic confirmation to first treatment was 3 days, but this varied by race/ethnicity and cancer site. In multivariate analyses, advanced cancer stage and outpatient treatment alone were associated with longer time from pathologic confirmation to treatment. Conclusion Our study identified factors associated with low clinical trial participation in AYA patients with cancer. These findings support the continued need to improve access to clinical trials and innovative treatments for this population, which may ultimately translate into improved survival.

The goal of this study was to estimate prevalence of HER-2 positive tumors in a population-based sample of 1026 women diagnosed in 2005 with early stage breast cancer. We modeled the relationship between patient and tumor characteristics and HER-2. HER-2 positive estimates were 19% for women aged ≤49 years and 15% aged ≥50 years. HER-2 varied by tumor grade and size in women aged ≤49 years but was not significant in multivariate analysis. Tumor grade and race were associated with HER-2 for women aged ≥50 years after controlling for other variables. HER-2 varies by age and by race and tumor in older women.

BACKGROUND: Breast cancer in men is rare, so clinical trials are not practical. Recommendations suggest treating men who are diagnosed with breast cancer using the guidelines for postmenopausal women; however, to date, no population-based studies have evaluated patterns of care. METHODS: To examine characteristics, treatment, and survival among men with newly diagnosed breast cancer, in 2003 and 2004, 512 men were identified from the Surveillance, Epidemiology and End Results Program. Data were reabstracted and therapy was verified through the patients' treating physicians. RESULTS: The majority of men (79%) were diagnosed through discovery of a breast lump or other signs/symptoms. Among men who had invasive disease, 86% underwent mastectomy, 37% received chemotherapy, and 58% received hormone therapy. In multivariate analysis, tumor size (P = .01) and positive lymph node status (P < .0001) were associated positively with the use of chemotherapy, whereas age group (P < .0001) and current unmarried status (P = .01) had negative associations. Among men who had invasive, estrogen receptor (ER)-positive/borderline tumors, the use of tamoxifen or aromatase inhibitors (AIs) was associated with age group (P = .05). Among men who had invasive disease, cancer mortality was associated with tumor size (P < .0001). Among men with ER-positive/borderline disease, increased cancer mortality was associated with tumor size (P < .0001), current unmarried status (P = .04), and decreased mortality with tamoxifen (P = .04). CONCLUSIONS: Tumor characteristics and marital status were the primary predictors of therapy and cancer mortality among men with breast cancer. Although AIs are not currently recommended, they are commonly prescribed. However, their use did not result in a decrease in cancer mortality. Research must examine the efficacy of AIs with and without gonadotropin-releasing hormone analogues. Cancer 2010. © 2010 American Cancer Society.

The small proportion of cancers diagnosed at the local disease stage, resectable at the time diagnosis, and responsive to chemotherapy contribute to poor survival making pancreatic cancer the fourth leading cause of cancer death among Americans. This emphasizes the importance of receiving appropriate palliative care. Racial/ethnic cancer treatment disparities have been observed for many cancer sites. We examine patterns of care in a population-based sample of African American, Hispanic and non-Hispanic white patients diagnosed with pancreatic cancer.Eligible cases were age 20 or older and newly diagnosed in 1998 with primary adenocarcinoma of the pancreas reported to the National Cancer Institute's Surveillance Epidemiology and End Results (SEER) program and selected for the NCI Patterns of Care/Quality of Care (POC/QOC) project (n = 697).Chemotherapy, the most frequently received treatment was less frequently received by African American patients (odds ratio [OR] 0.61, 95% confidence interval [CI] 0.37-0.95) and radiation less frequently received by Hispanic compared to non-Hispanic white white patients (OR 0.50, 95% CI, 0.27-0.95) after adjustment for age, stage, size of tumor, and insurance status in a multivariate regression model. Cancer-directed surgery of the primary site was received by 14.1% of patients, which did not significantly differ by race/ethnicity. Uninsured patients less often were recommended for or received surgery (OR 0.09, 95% CI 0.01-0.62) and (OR 0.07, 95% CI, 0.01-0.49), respectively.Differences in primary tumor size, stage and insurance status contributed to racial/ethnic differences in the receipt of cancer-directed surgery but did not explain differences in the receipt of chemotherapy for African American or radiation for Hispanic patients. More population-based research is needed to examine race/ethnicity, insurance status and receipt of treatment and palliative care for pancreatic cancer.

Objective: To compare the Medicare managed care (MC) and fee-for-service (FFS) sectors on stage at diagnosis and treatment patterns for prostate, female breast, and colorectal cancers, and to examine patterns across MC plans. Data: Surveillance, Epidemiology, and End Results-Medicare linked data. Methods: Among cases diagnosed at ages 65-79 between 1998 and 2002, we selected all MC enrollees (n = 42,467) and beneficiaries in FFS (n = 82,998) who resided in the same counties. MC and FFS samples were compared using logistic regression, adjusting for demographic, geographic, and clinical covariates. Results: The percentage of late stage cases was similar in MC and FFS for prostate and colorectal cancers; there were slightly fewer late stage breast cancer cases in MC after adjustment (7.3% vs. 8.5%, P < 0.001). Within MC, radical prostatectomy was performed less frequently for clinically localized prostate cancer (18.3% vs. 22.4%, P < 0.0001), and 12 or more lymph nodes were examined less often for resected colon cancer cases (40.9% vs. 43.0%, P < 0.05). Treatment patterns for early stage breast cancer were similar in MC and FFS. Analyses of treatment patterns at the individual plan level revealed significant variation among plans, as well as within the FFS sector, for all 3 types of cancer. Conclusions: On average, there are few significant differences in cancer diagnosis and treatment between MC and FFS. Such comparisons, however, mask the wide variability among MC plans, as well as FFS providers. Observed variation in patterns of care may be related to patient selection, but can potentially lead to outcome differences. These findings support the need for quality measures to evaluate plan practices and performance.

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.

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.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.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 (p0.01) and more likely to be treated by United States-trained physicians without research/teaching responsibilities and in hospitals without residency programs (p0.05). 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 (p0.01). Of HL patients, 73% were treated at a cancer center compared with 56% of patients with germ cell cancer (p0.01), while ALL (85%) and sarcoma (87%) patients were more likely to be treated in hospitals with residency programs (p0.01).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 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≤7 cm increased from 29% to 41%, respectively ( P = 0.22). Among patients with stage I tumors≤4 cm, use of PN significantly increased from 43% in 2004 to 55% in 2009 ( P ≤0.05). Among patients with stage I tumors>4 to 7 cm, 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.

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.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.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 aged18 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 aged18 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.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.

Over the past decade, clinical trials have proved the efficacy of treatments for colorectal cancer (CRC). This study tracks dissemination of these treatments for patients diagnosed with stage II and III disease and compares risk of death for those who received guideline therapy to those who did not.We conducted a stratified randomly sampled, population-based study of CRC treatment trends in the United States. Multivariate models were used to explore patient characteristics associated with receipt of treatments. We pooled data with a previous study-patients diagnosed in 1987-1991 and 1995. Cox proportional hazards models were used to assess observed cause-specific and all-cause mortality.In 2000, guideline therapy receipt decreased among stage III rectal cancer patients, but increased for stage III colon and stage II rectal cancer patients. As age increased, likelihood of receiving guideline treatment decreased (p0.0001). Overall, race/ethnicity was significantly associated with guideline therapy (p = 0.04). Rectal patients were less likely to have received guideline treatment. Consistent with randomized clinical trial findings, all-cause mortality was lower in patients who received guideline therapy, regardless of Charlson comorbidity score.Mortality was decreased in patients receiving guideline therapy. Although, rates of guideline-concordant therapy are low in community clinical practice, they are apparently increasing. Newer treatment (oxaliplatin, capecitabine) started to disseminate in 2000. Racial disparities, present in 1995, were not detected in 2000. Age disparities remain despite no evidence of greater chemotherapy-induced toxicity in the elderly. More equitable receipt of cancer treatment to all segments of the community will help to reduce mortality.

Background: Clinical trials have shown tamoxifen to be effective only in women with estrogen receptor (ER) – positive tumors. In a previous model, trends in the utilization of adjuvant therapy were modeled only as a function of age and stage of the disease and not ER status. In this paper, we integrate this previous estimate on the use of adjuvant systemic therapy for breast cancer in the United States with information on ER status from the Patterns of Care (POC) data to estimate the dissemination of adjuvant therapy for women with different ER-status tumors. We also summarize effi cacy of adjuvant systemic therapy reported in the overviews of early breast cancer clinical trials. These two inputs, dissemination and effi cacy, are key pieces for models that investigate the effect of breast cancer adjuvant therapy on the decline of U.S. breast cancer mortality. Methods: The adjustments to the previous models are calculated using the POC data on 7116 women with breast cancer diagnosed from 1987 to 1991 and in 1995 who were randomly selected from the Surveillance, and Epidemiology, and End Results (SEER) program registries. The POC data provide more accurate information on treatment and clinical variables (e. g., ER status) than the SEER data because medical records are reabstracted and further verifi ed with treating physicians. Results: Use of multiagent chemotherapy is higher for younger women ( 69 years) seem to receive almost exclusively tamoxifen irrespective of ER status, except for a small percentage of those with more advanced stages (II- and II+/IIIA) who also receive multiagent chemotherapy. Discussion: The estimated dissemination trends by ER status, based on modeling the POC data, reveal that treatment strategies with demonstrated effi cacy in clinical trials have been adopted into practice. The dissemination and effi cacy are the two factors necessary to input into models to determine the population impact of these therapies on U.S. breast cancer mortality. The largest decline in mortality would be expected for younger women

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.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.We undertook a longitudinal cohort analysis of survey and medical record abstract data obtained from a population-based sample of 3095 prostate cancer survivors.Consistent and inconsistent response patterns were assessed using descriptive statistics and regression modeling.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.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.

Introduction. Non-Hispanic black women are less often diagnosed with endometrial cancer than are non-Hispanic white women, but are more likely to die of their disease. Reasons for this disparity in outcome are not well understood. Methods. The Surveillance, Epidemiology, and End-Results Program data were used to sample women newly diagnosed in 1998 with cancer of the corpus uteri. A total of 711 women with no previous diagnosis of cancer were selected. Women with sarcoma were not eligible for the study. We then sought to verify the therapy provided each woman with her treating physician. Results. Non-Hispanic black women were diagnosed with higher stage, grade, poor histologic subtype, and greater extension of the tumor than were non-Hispanic white women. Hispanic women were diagnosed with more favorable tumor characteristics than non-Hispanic black women, but less favorable than non-Hispanic white women. The use of radiation and chemotherapy increased with stage. Conclusions. Our study did not show any difference in recommended therapy for women with uterine adenocarcinoma among NH black women, NH white women, and Hispanic women. We must look for other factors, therefore, to explain the disparities in cancer outcome observed among NH black women with endometrial cancer.

Background Men treated for clinically localized prostate cancer with either radical prostatectomy or external beam radiotherapy usually survive many years with the side effects of these treatments. We present treatment-specific quality-of-life outcomes for prostate cancer patients 5 years after initial diagnosis. Methods The cohort consisted of men aged 55-74 years who were newly diagnosed with clinically localized prostate cancer in 1994-1995 and were treated with radical prostatectomy (n = 901) or external beam radiotherapy (n = 286). We used clinical and quality-of-life data previously collected at the time of diagnosis (i.e., baseline) and at the 2-year follow-up and data newly collected at 5 years after diagnosis to compare urinary, bowel, and sexual function and to examine temporal changes in those functions. Odds ratios (ORs) and adjusted percentages were calculated by logistic regression. All statistical tests were two-sided. Results At 5 years after diagnosis, overall sexual function declined in both groups to approximately the same level. However, at 5 years after diagnosis, erectile dysfunction was more prevalent in the radical prostatectomy group than in the external beam radiotherapy group (79.3% versus 63.5%; OR = 2.5, 95% confidence interval [CI] = 1.6 to 3.8). Approximately 14%-16% of radical prostatectomy and 4% of external beam radiotherapy patients were incontinent at 5 years (OR = 4.4, 95% CI = 2.2 to 8.6). Bowel urgency and painful hemorrhoids were more common in the external beam radiotherapy group than in the radical prostatectomy group. All of these differences remained statistically significant after adjustment for confounders and for differences between treatment groups in some baseline characteristics. Conclusions At 5 years after diagnosis, men treated with radical prostatectomy for localized prostate cancer continue to experience worse urinary incontinence than men treated with external beam radiotherapy. However, the two treatment groups were more similar to each other with respect to overall sexual function, mostly because of a continuing decline in erectile function among the external beam radiotherapy patients between years 2 and 5.

OBJECTIVE—Age at onset of type 2 diabetes has decreased during the past 20 years, especially in black women. Studies of factors associated with insulin resistance and hyperglycemia in preadolescent and adolescent populations are essential to understanding diabetes development. RESEARCH DESIGN AND METHODS—The National Heart, Lung, and Blood Institute (NHLBI) Growth and Health Study (NGHS) is a 10-year cohort study of the development of obesity in black and white girls. Two NGHS centers examined the associations of obesity, puberty, and race with fasting insulin, glucose, and homeostasis model assessment of insulin resistance (HOMA-IR; a calculated index of insulin resistance) measures at 9–10 years of age (baseline) and 10 years later. RESULTS—Black girls had greater baseline and year-10 BMI than white girls, with a greater 10-year incidence of obesity. BMI-insulin correlations were positive in both black and white girls at both visits, but insulin remained higher in black girls after controlling for BMI. In black girls, insulin and HOMA-IR were higher in the prepubertal period (before the emergence of racial differences in BMI), increased more during puberty, and decreased less with its completion. Baseline BMI predicted year-10 glucose and the development of impaired fasting glucose (IFG) in black girls. In white girls, the rate of BMI increase during follow-up predicted these outcomes. The 10-year incidence of diabetes in black girls was 1.4%. CONCLUSIONS—Black-white differences in insulin resistance are not just a consequence of obesity, but precede the pubertal divergence in BMI. The development of IFG appears to be a function of the rate of increase of BMI in white girls and early obesity in black girls.

OBJECTIVE: We examined whether there were racial differences in initial treatment for clinically localized prostate cancer and investigated whether demographic, socioeconomic, clinical, or tumor characteristics could explain any racial differences. DESIGN: Prospective cohort study. SETTING: Population-based tumor registries in Connecticut, Los Angeles, and Atlanta. PARTICIPANTS: We evaluated 1144 African-American and non-Hispanic white men, aged 50 to 74 years, with clinically localized cancer diagnosed between October 1994 and October 1995. MEASUREMENTS AND MAIN RESULTS: We obtained demographic, socioeconomic, and clinical data from patient surveys and medical record abstractions. We reported adjusted percentages for receiving treatment derived from multinomial logistic regression. We found an interaction between race and tumor aggressiveness. Among men with more aggressive cancers (PSA > or = 20 ng/mL or Gleason score > or = 8), African Americans were less likely to undergo radical prostatectomy than non-Hispanic whites (35.2% vs 52.0%), but more likely to receive conservative management (38.9% vs 16.3%, P=.003). Among the 71% of subjects with less aggressive cancers, African Americans and non-Hispanic whites were equally likely to receive either radical prostatectomy or radiation therapy (80.0% vs 84.5%, P=.2). CONCLUSIONS: African Americans with more aggressive cancers were less likely to undergo radical prostatectomy and more likely to be treated conservatively. These treatment differences may reflect African Americans' greater likelihood for presenting with pathologically advanced cancer for which surgery has limited effectiveness. Among men with less aggressive cancers-the majority of cases-there were no racial differences in undergoing radical prostatectomy or radiation therapy.

Background Among Americans, both incidence and mortality from cancers of the larynx, oral cavity, and pharynx are higher for African Americans than whites and for men than women. In addition, the 5-year survival rates for these sites are significantly lower for African Americans than whites for each disease stage, particularly among African American males. We examine racial/ethnic variation in tumor characteristics, treatment practices, and their relationship to survival for cancers of the oral cavity, pharynx, larynx, nasal cavity and salivary glands. Methods Eligible individuals were age 20 or older and newly diagnosed with a primary invasive cancer of the oral cavity (excluding the lip), pharynx, larynx, sinuses or salivary glands in 1997 reported to one of nine National Cancer Institute's Surveillance Epidemiology and End Results Registries (SEER). Persons meeting the eligibility criteria for each registry were first stratified by race/ethnic group and stage then selected by random sampling within strata. Results We found racial/ethnic differences in diagnoses at specific anatomic sites, disease stage and treatment. African Americans less frequently received a cancer directed treatment than both whites and Hispanics and when treated were generally less likely to receive cancer-directed surgery. In multivariate analysis, the receipt of any cancer directed treatment was significantly associated with race and age group. African Americans and Hispanics had poorer, but not significantly so, overall, but not cancer-specific, survival. Conclusion We found racial differences in the receipt of cancer treatment among patients diagnosed with selected head and neck cancers. We also found a less favorable distribution of stage for African Americans and Hispanics when compared with whites. The differences in stage we noted and the lower rates of oral cancer screening previously reported for these populations suggests that differential rates of early detection may contribute to racial differences in survival and mortality from cancers of the oral cavity and pharynx. Therefore, we conclude that more equitable receipt of cancer treatment along with preventive measures and earlier detection will help reduce racial/ethnic disparities in survival and mortality from cancers of the oral cavity, pharynx and larynx.

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.

684 Background: Colorectal cancer (CRC) incidence and mortality have declined in the U.S. over the past two decades. Much of the decline can be attributed to screening and advances in treatment. Few studies have evaluated the extent to which recommended therapies have been adopted in community settings and temporal changes in patterns of care. Methods: Patients diagnosed with stages II and III CRC were randomly sampled from the population-based Surveillance, Epidemiology, and End Results (SEER) program in 1990-91, 1995, 2000, 2005, and 2010 (n=7,056). Treatment data were obtained through medical record review and physician verification. We described the receipt of adjuvant chemotherapy among colon cancer patients and preoperative or postoperative radiation therapy among rectal cancer patients. Log-binomial regression was used to examine factors associated with receipt of therapy. Results: Receipt of adjuvant chemotherapy increased among stages II and III colon cancer patients from 1990 (stage II: 22%, stage III: 55%) to 2005 (stage II: 32%, stage III: 72%) and decreased in 2010 (stage II: 29%, stage III: 65%). Chemotherapy regimens changed over time; there was an increase in the use of capecitabine (3% in 2000 to 24% in 2010) and oxaliplatin (6% in 2000 to 79% in 2010). Stage III colon cancer patients who were older (75-79 years: RR 0.82, 95% CI 0.72, 0.94; ≥80 years: RR 0.36, 95% CI 0.27, 0.49) or had a comorbidity score ≥ 2 (RR 0.54, 95% CI 0.34, 0.86) were less likely to receive adjuvant chemotherapy. Receipt of radiation therapy among stages II and III rectal cancer patients increased across all study years from 46% to 66%, with a shift toward preoperative therapy in 2005. From 2005 to 2010, receipt of neoadjuvant chemoradiation followed by surgery and postoperative chemotherapy nearly doubled (11% in 2005 to 21% in 2010). Increasing age (75-79 years: RR 0.60, 95% CI 0.48, 0.75; ≥80 years: RR 0.34, 95% CI 0.25, 0.45) was associated with lower chemoradiation use in rectal cancer. Conclusions: Our findings demonstrate increased adoption of adjuvant therapies for both colon and rectal cancer patients and differences in therapy receipt by age, comorbidity, and diagnosis year. Improved receipt of adjuvant therapies in the community may further reduce CRC mortality.

BACKGROUND The age specific breast cancer incidence rate for African-American women under age 35 is more than twice the rate for white women of similar age, and the mortality rate is more than three times higher. To determine factors that may explain racial/ethnic variation in outcomes among young women diagnosed with breast cancer, the authors examined the clinical presentation, treatment, and survival of African-American, Hispanic, and white women under age 35 years. METHODS Surveillance, Epidemiology, and End Results (SEER) Program data for 1990–1998 and SEER Patterns of Care data for 1990, 1991, and 1995 were used for this analysis. Multivariate logistic regression analyses were performed to examine factors associated with the receipt of selected breast cancer treatments. Kaplan–Meier survival analyses and Cox proportional hazards regression analyses were used to examine 5-year overall survival and disease-specific survival. RESULTS The authors found racial/ethnic variation in clinical presentation, treatment, and survival. Both African-American and Hispanic women presented with higher disease stage and a higher prevalence of adverse prognostic indicators compared to white women. African-American and Hispanic women received cancer-directed surgery and radiation less frequently after undergoing breast-conserving surgery. Racial/ethnic differences in clinical presentation and treatment were associated with poorer overall survival in unadjusted analyses. African-American and Hispanic women also had poorer overall survival after controlling for clinical and demographic characteristics and type of treatment. CONCLUSIONS Future research studies should further examine the factors that influence racial/ethnic differences in incidence, clinical presentation, and treatment differentials among young women diagnosed with breast cancer. A better understanding of these factors will facilitate the development of strategies to help eliminate this health disparity. Cancer 2003;97:134–47. Published 2003 by the American Cancer Society. DOI 10.1002/cncr.11051