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1.  Clinical Trial Participation and Time to Treatment Among Adolescents and Young Adults With Cancer: Does Age at Diagnosis or Insurance Make a Difference? 
Journal of Clinical Oncology  2011;29(30):4045-4053.
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.
doi:10.1200/JCO.2011.36.2954
PMCID: PMC3209697  PMID: 21931022
2.  Patterns and predictors of breast cancer chemotherapy use in Kaiser Permanente Northern California, 2004-2007 
Chemotherapy regimens for early stage breast cancer have been tested by randomized clinical trials, and specified by evidence-based practice guidelines. However, little is known about the translation of trial results and guidelines to clinical practice. We extracted individual-level data on chemotherapy administration from the electronic medical records of Kaiser Permanente Northern California (KPNC), a pre-paid integrated healthcare system serving 29% of the local population. We linked data to the California Cancer Registry, incorporating socio-demographic and tumor factors, and performed multivariable logistic regression analyses on the receipt of specific chemotherapy regimens. We identified 6,004 women diagnosed with Stage I–III breast cancer at KPNC during 2004–2007; 2,669 (44.5 %) received at least one chemotherapy infusion at KPNC within 12 months of diagnosis. Factors associated with receiving chemotherapy included age <50 years [odds ratio (OR) 2.27, 95 % confidence interval (CI) 1.81–2.86], tumor >2 cm (OR 2.14, 95 % CI 1.75-2.61), involved lymph nodes (OR 11.3, 95 % CI 9.29–13.6), hormone receptor-negative (OR 6.94, 95% CI 4.89–9.86), Her2/neu-positive (OR 2.71, 95% CI 2.10–3.51), or high grade (OR 3.53, 95 % CI 2.77-4.49) tumors; comorbidities associated inversely with chemotherapy use [heart disease for anthracyclines (OR 0.24, 95 % CI 0.14–0.41), neuropathy for taxanes (OR 0.45, 95 % CI 0.22–0.89)]. Relative to high-socioeconomic status (SES) non-Hispanic Whites, we observed less anthracycline and taxane use by SES non-Hispanic Whites (OR 0.63, 95 % CI 0.49-0.82) and American Indians (OR 0.23, 95 % CI 0.06–0.93), and more anthracycline use by high-SES Asians/Pacific Islanders (OR 1.72, 95 % CI 1.02–2.90). In this equal-access healthcare system, chemotherapy use followed practice guidelines, but varied by race and socio-demographic factors. These findings may inform efforts to optimize quality in breast cancer care.
doi:10.1007/s10549-012-2329-5
PMCID: PMC3769522  PMID: 23139057
Breast cancer; Chemotherapy; Patterns of care; Electronic medical record; Disparities; Outcomes research; Quality of care
3.  Impact of breast cancer subtypes on 3-year survival among adolescent and young adult women 
Introduction
Young women have poorer survival after breast cancer than do older women. It is unclear whether this survival difference relates to the unique distribution of hormone receptor (HR) and human epidermal growth factor receptor 2 (HER2)-defined molecular breast cancer subtypes among adolescent and young adult (AYA) women aged 15 to 39 years. The purpose of our study was to examine associations between breast cancer subtypes and short-term survival in AYA women, as well as to determine whether the distinct molecular subtype distribution among AYA women explains the unfavorable overall breast cancer survival statistics reported for AYA women compared with older women.
Methods
Data for 5,331 AYA breast cancers diagnosed between 2005 and 2009 were obtained from the California Cancer Registry. Survival by subtype (triple-negative; HR+/HER2-; HR+/HER2+; HR-/HER2+) and age-group (AYA versus 40- to 64-year-olds) was analyzed with Cox proportional hazards regression with follow-up through 2010.
Results
With up to 6 years of follow-up and a mean survival time of 3.1 years (SD = 1.5 years), AYA women diagnosed with HR-/HER + and triple-negative breast cancer experienced a 1.6-fold and 2.7-fold increased risk of death, respectively, from all causes (HR-/HER + hazard ratio: 1.55; 95% confidence interval (CI): 1.10 to 2.18; triple-negative HR: 2.75; 95% CI, 2.06 to 3.66) and breast cancer (HR-/HER + hazard ratio: 1.63; 95% CI, 1.12 to 2.36; triple-negative hazard ratio: 2.71; 95% CI, 1.98 to 3.71) than AYA women with HR+/HER2- breast cancer. AYA women who resided in lower socioeconomic status neighborhoods, had public health insurance, and were of Black, compared with White, race/ethnicity experienced worse survival. This race/ethnicity association was attenuated somewhat after adjusting for breast cancer subtypes (hazard ratio, 1.33; 95% CI, 0.98 to 1.82). AYA women had similar all-cause and breast cancer-specific short-term survival as older women for all breast cancer subtypes and across all stages of disease.
Conclusions
Among AYA women with breast cancer, short-term survival varied by breast cancer subtypes, with the distribution of breast cancer subtypes explaining some of the poorer survival observed among Black, compared with White, AYA women. Future studies should consider whether distribution of breast cancer subtypes and other factors, including differential receipt of treatment regimens, influences long-term survival in young compared with older women.
doi:10.1186/bcr3556
PMCID: PMC3978627  PMID: 24131591
4.  Unmet adolescent and young adult cancer survivors information and service needs: A population-based cancer registry study 
Purpose
We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs.
Methods
We studied 523 AYAs recruited from 7 population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma in 2007-08. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors.
Results
More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29% for in-home nursing to 75% for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-White race/ethnicity, and participants who reported less than excellent general health, or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥ 3 physical treatment-related symptoms.
Conclusions
Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors.
Implications for Cancer Survivors
We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.
doi:10.1007/s11764-012-0219-9
PMCID: PMC3433596  PMID: 22457219
adolescent; young adult; cancer survivor; information needs; service needs
5.  Age-Specific Incidence of Breast Cancer Subtypes: Understanding the Black–White Crossover 
Background Breast cancer incidence is higher among black women than white women before age 40 years, but higher among white women than black women after age 40 years (black–white crossover). We used newly available population-based data to examine whether the age-specific incidences of breast cancer subtypes vary by race and ethnicity.
Methods We classified 91908 invasive breast cancers diagnosed in California between January 1, 2006, and December 31, 2009, by subtype based on tumor expression of estrogen receptor (ER) and progesterone receptor (PR)—together referred to as hormone receptor (HR)—and human epidermal growth factor receptor 2 (HER2). Breast cancer subtypes were classified as ER or PR positive and HER2 negative (HR+/HER2−), ER or PR positive and HER2 positive (HR+/HER2+), ER and PR negative and HER2 positive (HR−/HER2+), and ER, PR, and HER2 negative (triple-negative). We calculated and compared age-specific incidence rates, incidence rate ratios, and 95% confidence intervals by subtype and race (black, white, Hispanic, and Asian). All P values are two-sided.
Results We did not observe an age-related black–white crossover in incidence for any molecular subtype of breast cancer. Compared with white women, black women had statistically significantly higher rates of triple-negative breast cancer at all ages but statistically significantly lower rates of HR+/HER2− breast cancers after age 35 years (all P < .05). The age-specific incidence of HR+/HER2+ and HR−/HER2+ subtypes did not vary markedly between white and black women.
Conclusions The black–white crossover in breast cancer incidence occurs only when all breast cancer subtypes are combined and relates largely to higher rates of triple-negative breast cancers and lower rates of HR+/HER2− breast cancers in black vs white women.
doi:10.1093/jnci/djs264
PMCID: PMC3640371  PMID: 22773826
6.  Impact of Cancer on Work and Education Among Adolescent and Young Adult Cancer Survivors 
Journal of Clinical Oncology  2012;30(19):2393-2400.
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.
doi:10.1200/JCO.2011.39.6333
PMCID: PMC3675694  PMID: 22614977
7.  Patient, hospital, and neighborhood factors associated with treatment of early-stage breast cancer among Asian American women in California 
Background
Clinical guidelines recommend breast conserving surgery (BCS) with radiation as a viable alternative to mastectomy for treatment of early-stage breast cancer. Yet, Asian Americans (AA) are more likely than other groups to have mastectomy or omit radiation after BCS.
Methods
We applied polytomous logistic regression and recursive partitioning (RP) to analyze factors associated with mastectomy, or BCS without radiation, among 20,987 California AAs diagnosed with stage 0–II breast cancer from 1990–2007.
Results
The percentage receiving mastectomy ranged from 40% among US-born Chinese to 58% among foreign-born Vietnamese. Factors associated with mastectomy included tumor characteristics such as larger tumor size, patient characteristics such as older age and foreign birthplace among some AA ethnicities, and additional factors including hospital (smaller hospital size, not NCI cancer center, low socioeconomic status (SES) patient composition, and high hospital AA patient composition) and neighborhood characteristics (ethnic enclaves of low SES). These hospital and neighborhood characteristics were also associated with BCS without radiation. Through RP, the highest mastectomy subgroups were defined by tumor characteristics such as size and anatomic location, in combination with diagnosis year and nativity.
Conclusions
Tumor characteristics and, secondarily, patient, hospital and neighborhood factors, are predictors of mastectomy and omission of radiation following BCS among AAs.
Impact
By focusing on interactions among patient, hospital, and neighborhood factors in the differential receipt of breast cancer treatment, our study identifies subgroups of interest for further study, and translation into public health and patient-focused initiatives to ensure that all women are fully informed about treatment options.
doi:10.1158/1055-9965.EPI-11-1143
PMCID: PMC3406750  PMID: 22402290
8.  The Association Between Neighborhood Characteristics and Body Size and Physical Activity in the California Teachers Study Cohort 
American journal of public health  2011;102(4):689-697.
Objectives
We considered interactions between physical activity and body mass index (BMI) and neighborhood factors.
Methods
We used recursive partitioning to identify predictors of low recreational physical activity (<2.5 hours/week) and overweight and obesity (BMI≥25.0 kg/m2) among 118 315 women in the California Teachers Study. Neighborhood characteristics were based on 2000 US Census data and Reference US business listings.
Results
Low physical activity and being overweight or obese were associated with individual sociodemographic characteristics, including race/ethnicity and age. Among White women aged 36 to 75 years, living in neighborhoods with more household crowding was associated with a higher probability of low physical activity (54% vs 45% to 51%). In less crowded neighborhoods where more people worked outside the home, the existence of fewer neighborhood amenities was associated with a higher probability of low physical activity (51% vs 46%). Among non–African American middle-aged women, living in neighborhoods with a lower socioeconomic status was associated with a higher probability of being overweight or obese (46% to 59% vs 38% in high–socioeconomic status neighborhoods).
Conclusions
Associations between physical activity, overweight and obesity, and the built environment varied by sociodemographic characteristics in this educated population.
doi:10.2105/AJPH.2011.300150
PMCID: PMC3410673  PMID: 21852626
9.  Nativity and papillary thyroid cancer incidence rates among Hispanic women in California 
Cancer  2011;118(1):216-222.
Background
Overall, the incidence of papillary thyroid cancer in Hispanic women residing in the United States (US) is similar to that of non-Hispanic white women. However, little is known as to whether rates in Hispanic women vary by nativity, which may influence exposure to important risk factors.
Methods
Nativity-specific incidence rates among Hispanic women were calculated for papillary thyroid cancer using data from the California Cancer Registry (CCR) for the period 1988–2004. For the 35% of cases for whom birthplace information was not available from the CCR, nativity was statistically imputed based on age at Social Security number issuance. Population estimates were extracted based on US Census data. Incidence rate ratios (IRR) and 95% confidence intervals (CI) were also estimated.
Results
In young (age <55 years) Hispanic women, the incidence of papillary thyroid cancer among US-born (10.65 per 100,000) was significantly greater than that for foreign-born (6.67 per 100,000; IRR=1.60, 95% CI: 1.44–1.77). The opposite pattern was observed in older women. The age-specific patterns showed marked differences by nativity: among foreign-born, rates increased slowly until age 70 years, whereas, among US-born, incidence rates peaked during the reproductive years. Incidence rates increased over the study period in all subgroups.
Conclusion
Incidence rates of papillary thyroid cancer vary by nativity and age among Hispanic women residing in California. These patterns can provide insight for future etiologic investigations of modifiable risk factors for this increasingly common and understudied cancer.
doi:10.1002/cncr.26223
PMCID: PMC3179782  PMID: 21692062
papillary thyroid cancer; incidence rates; nativity; Hispanic women; cancer surveillance
10.  Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study 
Introduction: Cancer for adolescents and young adults (AYA) differs from younger and older patients; AYA face medical challenges while navigating social and developmental transitions. Research suggests that these patients are under or inadequately served by current support services, which may affect health-related quality of life (HRQOL).
Methods: We examined unmet service needs and HRQOL in the National Cancer Institute’s Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort (n = 484), age 15–39, diagnosed with cancer 6–14 months prior, in 2007–2009. Unmet service needs were psychosocial, physical, spiritual, and financial services where respondents endorsed that they needed, but did not receive, a listed service. Linear regression models tested associations between any or specific unmet service needs and HRQOL, adjusting for demographic, medical, and health insurance variables.
Results: Over one-third of respondents reported at least one unmet service need. The most common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and mental health (p’s < 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p’s < 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consistently associated with poorer functioning across domains.
Discussion: Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant practices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services.
doi:10.3389/fonc.2013.00075
PMCID: PMC3619248  PMID: 23580328
support service needs; health-related quality of life; adolescent; young adult oncology; cancer
11.  Papillary thyroid cancer incidence rates vary significantly by birthplace in Asian American women 
Cancer causes & control : CCC  2011;22(3):479-485.
Objective
To investigate how birthplace influences the incidence of papillary thyroid cancer among Asian American women.
Methods
Birthplace- and ethnic-specific age-adjusted and age-specific incidence rates were calculated using data from the California Cancer Registry for the period 1988–2004. Birthplace was statistically imputed for 30% of cases using a validated imputation method based on age at Social Security number issuance. Population estimates were obtained from the US Census. Incidence rate ratios (IRR) and 95% confidence intervals (CI) were estimated for foreign-born vs. US-born women.
Results
Age-adjusted incidence rates of papillary thyroid cancer among Filipina (13.7 per 100,000) and Vietnamese (12.7) women were more than double those of Japanese women (6.2). US-born Chinese (IRR=0.48, 95% CI: 0.40–0.59) and Filipina women (IRR=0.74, 95% CI: 0.58–0.96) had significantly higher rates than those who were foreign-born; the opposite was observed for Japanese women (IRR=1.55, 95% CI: 1.17–2.08). The age-specific patterns among all foreign-born Asian women and US-born Japanese women showed a slow steady increase in incidence until age 70. However, among US-born Asian women (except Japanese), substantially elevated incidence rates during the reproductive and menopausal years were evident.
Conclusions
Ethnic- and birthplace-variation in papillary thyroid cancer incidence can provide insight into the etiology of this increasingly common and understudied cancer.
doi:10.1007/s10552-010-9720-5
PMCID: PMC3291661  PMID: 21207130
papillary thyroid cancer; incidence rates; birthplace; Asian American women; cancer surveillance
12.  Past recreational physical activity, body size, and all-cause mortality following breast cancer diagnosis: results from the Breast Cancer Family Registry 
Few studies have considered the joint association of body mass index (BMI) and physical activity, two modifiable factors, with all-cause mortality after breast cancer diagnosis. Women diagnosed with invasive breast cancer (n=4,153) between 1991 and 2000 were enrolled in the Breast Cancer Family Registry through population-based sampling in Northern California, USA; Ontario, Canada; and Melbourne and Sydney, Australia. During a median follow-up of 7.8 years, 725 deaths occurred. Baseline questionnaires assessed moderate and vigorous recreational physical activity and BMI prior to diagnosis. Associations with all-cause mortality were assessed using Cox proportional hazards regression, adjusting for established prognostic factors. Compared with no physical activity, any recreational activity during the three years prior to diagnosis was associated with a 34% lower risk of death (hazard ratio (HR) = 0.66, 95% confidence interval (CI): 0.51-0.85) for women with estrogen receptor (ER)-positive tumors, but not those with ER-negative tumors; this association did not appear to differ by race/ethnicity or BMI. Lifetime physical activity was not associated with all-cause mortality. BMI was positively associated with all-cause mortality for women diagnosed at age ≥50 years with ER-positive tumors (compared with normal-weight women, HR for overweight = 1.39, 95% CI: 0.90-2.15; HR for obese = 1.77, 95% CI: 1.11-2.82). BMI associations did not appear to differ by race/ethnicity. Our findings suggest that physical activity and BMI exert independent effects on overall mortality after breast cancer.
doi:10.1007/s10549-010-0774-6
PMCID: PMC2920352  PMID: 20140702
breast cancer; physical activity; body mass index; obesity; mortality
13.  Disparities in Breast Cancer Survival Among Asian Women by Ethnicity and Immigrant Status: A Population-Based Study 
American journal of public health  2010;100(5):861-869.
Objectives
We investigated heterogeneity in ethnic composition and immigrant status among US Asians as an explanation for disparities in breast cancer survival.
Methods
We enhanced data from the California Cancer Registry and the Surveillance, Epidemiology, and End Results program through linkage and imputation to examine the effect of immigrant status, neighborhood socioeconomic status, and ethnic enclave on mortality among Chinese, Japanese, Filipino, Korean, South Asian, and Vietnamese women diagnosed with breast cancer from 1988 to 2005 and followed through 2007.
Results
US-born women had similar mortality rates in all Asian ethnic groups except the Vietnamese, who had lower mortality risk (hazard ratio [HR]=0.3; 95% confidence interval [CI]=0.1, 0.9). Except for Japanese women, all foreign-born women had higher mortality than did US-born Japanese, the reference group. HRs ranged from 1.4 (95% CI=1.2, 1.7) among Koreans to 1.8 (95% CI=1.5, 2.2) among South Asians and Vietnamese. Little of this variation was explained by differences in disease characteristics.
Conclusions
Survival after breast cancer is poorer among foreign- than US-born Asians. Research on underlying factors is needed, along with increased awareness and targeted cancer control.
doi:10.2105/AJPH.2009.176651
PMCID: PMC2853623  PMID: 20299648
14.  Breast cancer incidence patterns among California Hispanic women: Differences by nativity and residence in an enclave 
Background
Breast cancer incidence is higher in US-born Hispanic women than foreign-born Hispanics, but no studies have examined how these rates have changed over time. To better inform cancer control efforts, we examined incidence trends by nativity and incidence patterns by neighborhood socioeconomic status (SES) and Hispanic enclave (neighborhoods with high proportions of Hispanics or Hispanic immigrants).
Methods
Information regarding all Hispanic women diagnosed with invasive breast cancer between 1988 and 2004 were obtained from the California Cancer Registry. Nativity was imputed from Social Security number for the 27% of cases with missing birthplace information. Neighborhood variables were developed from Census data.
Results
From 1988 to 2004, incidence rates for US-born Hispanics were parallel, but lower than, those of non-Hispanic whites, showing an annual 6% decline from 2002 to 2004. Foreign-born Hispanics had an annual 4% increase in incidence rates from 1995 to 1998 and a 1.4% decline thereafter. Rates were 38% higher for US- than foreign-born Hispanics, with elevations more pronounced for localized than regional/distant disease, and for women > 50 years of age. Residence in higher SES and lower Hispanic enclave neighborhoods were independently associated with higher incidence, with Hispanic enclave having a stronger association than SES.
Conclusions
Compared to foreign-born, US-born Hispanic women in California had higher prevalence of breast cancer risk factors, suggesting that incidence patterns largely reflects these differences in risk factors.
Impact
Further research is needed to separate the effects of individual- and neighborhood-level factors that impact incidence in this large and growing population.
doi:10.1158/1055-9965.EPI-10-0021
PMCID: PMC2895619  PMID: 20447917
15.  Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study 
Journal of Cancer Survivorship  2011;5(3):305-314.
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.
doi:10.1007/s11764-011-0173-y
PMCID: PMC3159756  PMID: 21274648
Adolescent cancer; Young adult cancer; Survey; Response rates; Medical records; Consent forms
16.  Disparities in survival after Hodgkin lymphoma: a population-based study 
Cancer causes & control : CCC  2009;20(10):1881-1892.
Survival after Hodgkin lymphoma (HL) is generally favorable, but may vary by patient demographic characteristics. The authors examined HL survival according to race/ethnicity and neighborhood socioeconomic status (SES), determined from residential census block group at diagnosis. For 12,492 classical HL patients ≥15 years diagnosed in California during 1988-2006 and followed through 2007, we determined risk of overall and HL-specific death using Cox proportional hazards regression; analyses were stratified by age and Ann Arbor stage. Irrespective of disease stage, patients with lower neighborhood SES had worse overall and HL-specific survival than patients with higher SES. Patients with the lowest quintile of neighborhood SES had a 64% (patients aged 15-44 years) and 36% (≥45 years) increased risk of HL-death compared to patients with the highest quintile of SES; SES results were similar for overall survival. Even after adjustment for neighborhood SES, blacks and Hispanics had increased risks of HL-death 74% and 43% (15-44 years) and 40% and 17% (≥45 years), respectively, higher than white patients. The racial/ethnic differences in survival were evident for all stages of disease. These data provide evidence for substantial, and probably remediable, racial/ethnic and neighborhood SES disparities in HL outcomes.
doi:10.1007/s10552-009-9382-3
PMCID: PMC2888633  PMID: 19557531
Hodgkin disease; survival; mortality; social class; census
17.  Family history of breast cancer and all-cause mortality after breast cancer diagnosis in the Breast Cancer Family Registry 
Background
Although having a family history of breast cancer is a well established breast cancer risk factor, it is not known whether it influences mortality after breast cancer diagnosis.
Methods
Subjects were 4,153 women with first primary incident invasive breast cancer diagnosed between 1991 and 2000, and enrolled in the Breast Cancer Family Registry through population-based sampling in Northern California, USA; Ontario, Canada; and Melbourne and Sydney, Australia. Cases were oversampled for younger age at diagnosis and/or family history of breast cancer. Carriers of germline mutations in BRCA1 or BRCA2 were excluded. Cases and their relatives completed structured questionnaires assessing breast cancer risk factors and family history of cancer. Cases were followed for a median of 6.5 years, during which 725 deaths occurred. Cox proportional hazards regression was used to evaluate associations between family history of breast cancer at the time of diagnosis and risk of all-cause mortality after breast cancer diagnosis, adjusting for established prognostic factors.
Results
The hazard ratios for all-cause mortality were 0.98 (95% confidence interval [CI]=0.84-1.15) for having at least one first- or second-degree relative with breast cancer, and 0.85 (95% CI=0.70-1.02) for having at least one first-degree relative with breast cancer, compared with having no such family history. Estimates did not vary appreciably when stratified by case or tumor characteristics.
Conclusions
Family history of breast cancer is not associated with all-cause mortality after breast cancer diagnosis for women without a known germline mutation in BRCA1 or BRCA2. Therefore, clinical management should not depend on family history of breast cancer.
doi:10.1007/s10549-008-0255-3
PMCID: PMC2728159  PMID: 19034644
breast cancer; survival; mortality; family history
18.  Improvements in Survival After Follicular Lymphoma by Race/Ethnicity and Socioeconomic Status: A Population-Based Study 
Journal of Clinical Oncology  2009;27(18):3044-3051.
Purpose
A recent report suggested improvements in survival after follicular lymphoma (FL), but not for all racial/ethnic groups. To better understand the reasons for these FL survival differences, we examined the joint influences of diagnostic period, race/ethnicity, and neighborhood socioeconomic status (SES) on survival in a large population-based case series.
Methods
All patients (n = 15,937) diagnosed with FL between 1988 and 2005 in California were observed for vital status through November 2007. Overall and FL-specific survival were analyzed with Kaplan-Meier and Cox proportional hazards regression. Neighborhood SES was assigned from United States Census data using residence at diagnosis.
Results
Overall and FL-specific survival improved 22% and 37%, respectively, from 1988 to 1997 to 1998 to 2005, and were observed in all racial/ethnic groups. Asian/Pacific Islanders had better survival than non-Hispanic white, Hispanic, and black patients who had similar outcomes. Lower neighborhood SES was associated with worse survival in patients across all stages of disease (P for trend < .01). Patients with the lowest SES quintile had a 49% increased risk of death from all causes (hazard ratio [HR] = 1.49, 95% CI, 1.30 to 1.72) and 31% increased risk of death from FL (HR = 1.31; 95% CI, 1.06 to 1.60) than patients with the highest SES.
Conclusion
Evolving therapies have likely led to improvements in survival after FL. Although improvements have occurred within all racial/ethnic groups, lower neighborhood SES was significantly associated with substantially poorer survival.
doi:10.1200/JCO.2008.18.8052
PMCID: PMC2702236  PMID: 19451447
19.  Pre-diagnosis reproductive factors and all-cause mortality for women with breast cancer in the Breast Cancer Family Registry 
Studies have examined the prognostic relevance of reproductive factors prior to breast cancer (BC) diagnosis, but most have been small and overall their findings inconclusive. Associations between reproductive risk factors and all-cause mortality after BC diagnosis were assessed using a population-based cohort of 3,107 women of white European ancestry with invasive BC (1,130 from Melbourne and Sydney, Australia; 1,441 from Ontario, Canada; and 536 from Northern California, USA). During follow-up with a median of 8.5 years, 567 deaths occurred. At recruitment, questionnaire data were collected on oral contraceptive use, number of full-term pregnancies, age at first full-term pregnancy, time from last full-term pregnancy to BC diagnosis, breastfeeding, age at menarche and menopause and menopausal status at BC diagnosis. Hazard ratios (HR) for all-cause mortality were estimated using Cox proportional hazards models with and without adjustment for age at diagnosis, study center, education and body mass index. Compared with nulliparous women, those who had a child up to 2 years, or between 2 to 5 years, prior to their BC diagnosis were more likely to die. The unadjusted HR estimates were 2.75 (95%CI=1.98–3.83, p<0.001) and 2.20 (95%CI=1.65–2.94, p<0.001), respectively, and the adjusted estimates were 2.25 (95%CI=1.59–3.18, p<0.001) and 1.82 (95%CI=1.35–2.46, p<0.001), respectively). When evaluating the prognosis of women recently diagnosed with BC, the time since last full-term pregnancy should be routinely considered along with other established host and tumor prognostic factors, but consideration of other reproductive factors may not be warranted.
doi:10.1158/1055-9965.EPI-08-1014
PMCID: PMC2746957  PMID: 19505912
Breast cancer; survival; reproductive; outcome; pregnancy
20.  The burden of liver cancer in Asians and Pacific Islanders in the Greater San Francisco Bay Area, 1990 through 2004 
Cancer  2007;109(10):2100-2108.
Background
No previous U.S. study has examined time trends in the incidence rate of liver cancer in the high-risk Asian/Pacific Islander population. We evaluated liver cancer incidence trends in Chinese, Filipino, Japanese, Korean, and Vietnamese males and females in the Greater San Francisco Bay Area of California between 1990 and 2004.
Methods
Populations at risk were estimated using the cohort component demographic method. Annual percentage changes (APCs) in age-adjusted incidence rates of primary liver cancer among Asians/Pacific Islanders in the Greater Bay Area Cancer Registry were calculated using joinpoint regression analysis.
Results
The incidence rate of liver cancer between 1990 and 2004 did not change significantly in Asian/Pacific Islander males or females overall. However, the incidence rate declined, albeit statistically non-significantly, in Chinese males (APC =−1.6% [95% confidence interval (CI) =−3.4%, 0.3%], Japanese males (APC = −4.9%, 95% CI =−10.7%, 1.2%), and Japanese females (APC =−3.6%, 95% CI =−8.9%, 2.0%). Incidence rates remained consistently high for Vietnamese, Korean, and Filipino males and females. Trends in the incidence rate of hepatocellular carcinoma were comparable to those for liver cancer. While disparities in liver cancer incidence between Asians/Pacific Islanders and other racial/ethnic groups diminished between 1990–1994 and 2000–2004, those among Asian subgroups increased.
Conclusions
Liver cancer continues to affect Asian/Pacific Islander Americans disproportionately, with consistently high incidence rates in most subgroups. Culturally targeted prevention methods are needed to reduce the high rates of liver cancer in this growing population in the U.S.
doi:10.1002/cncr.22642
PMCID: PMC2777532  PMID: 17385214
Asian Americans; epidemiology; hepatocellular carcinoma; liver cancer; surveillance
21.  Lung cancer incidence in never-smokers 
Purpose
Lung cancer is a leading cause of cancer death worldwide. While smoking remains the predominant cause of lung cancer, lung cancer in never-smokers is an increasingly prominent public health issue. Data on this topic, particularly lung cancer incidence rates in never-smokers, however, are limited.
Methods
We review the existing literature on lung cancer incidence and mortality rates among never-smokers and present new data regarding rates in never-smokers from large, population-based cohorts: 1) Nurses’ Health Study, 2) Health Professionals Follow-up Study, 3) California Teachers Study, 4) Multiethnic Cohort Study, 5) Swedish Lung Cancer Register in the Uppsala/Örebro region, and the 6) First National Health and Nutrition Examination Survey Epidemiologic Follow-up Study.
Results
Truncated age-adjusted incidence rates of lung cancer among never-smokers aged 40 to 79 years in these six cohorts ranged from 14.4 to 20.8 per 100,000 person-years in women and 4.8 to 13.7 per 100,000 person-years in men, supporting earlier observations that women are more likely than men to have non-smoking-associated lung cancer. The distinct biology of lung cancer in never-smokers is apparent in differential responses to epidermal growth factor receptor inhibitors and an increased prevalence of adenocarcinoma histology in never-smokers.
Conclusion
Lung cancer in never-smokers is an important public health issue needing further exploration of its incidence patterns, etiology, and biology.
doi:10.1200/JCO.2006.07.2983
PMCID: PMC2764546  PMID: 17290054
22.  The California Neighborhoods Data System: a new resource for examining the impact of neighborhood characteristics on cancer incidence and outcomes in populations 
Cancer causes & control : CCC  2011;22(4):631-647.
Research on neighborhoods and health has been growing. However, studies have not investigated the association of specific neighborhood measures, including socioeconomic and built environments, with cancer incidence or outcomes. We developed the California Neighborhoods Data System (CNDS), an integrated system of small area-level measures of socioeconomic and built environments for California, which can be readily linked to individual-level geocoded records. The CNDS includes measures such as socioeconomic status, population density, racial residential segregation, ethnic enclaves, distance to hospitals, walkable destinations, and street connectivity. Linking the CNDS to geocoded cancer patient information from the California Cancer Registry, we demonstrate the variability of CNDS measures by neighborhood socioeconomic status and predominant race/ethnicity for the 7,049 California census tracts, as well as by patient race/ethnicity. The CNDS represents an efficient and cost-effective resource for cancer epidemiology and control. It expands our ability to understand the role of neighborhoods with regard to cancer incidence and outcomes. Used in conjunction with cancer registry data, these additional contextual measures enable the type of transdisciplinary, “cells-to-society” research that is now being recognized as necessary for addressing population disparities in cancer incidence and outcomes.
doi:10.1007/s10552-011-9736-5
PMCID: PMC3102646  PMID: 21318584
Neighborhood; Socioeconomic environment; Built environment; Immigration; Contextual factors; GIS
23.  Hidden Breast Cancer Disparities in Asian Women: Disaggregating Incidence Rates by Ethnicity and Migrant Status 
American journal of public health  2010;100(Suppl 1):S125-S131.
Objectives
We estimated trends in breast cancer incidence rates for specific Asian populations in California to determine if disparities exist by immigrant status and age.
Methods
To calculate rates by ethnicity and immigrant status, we obtained data for 1998 through 2004 cancer diagnoses from the California Cancer Registry and imputed immigrant status from Social Security Numbers for the 26% of cases with missing birthplace information. Population estimates were obtained from the 1990 and 2000 US Censuses.
Results
Breast cancer rates were higher among US- than among foreign-born Chinese (incidence rate ratio [IRR] = 1.84; 95% confidence interval [CI] = 1.72, 1.96) and Filipina women (IRR = 1.32; 95% CI=1.20, 1.44), but similar between US- and foreign-born Japanese women. US-born Chinese and Filipina women who were younger than 55 years had higher rates than did White women of the same age. Rates increased over time in most groups, as high as 4% per year among foreign-born Korean and US-born Filipina women. From 2000–2004, the rate among US-born Filipina women exceeded that of White women.
Conclusions
These findings challenge the notion that breast cancer rates are uniformly low across Asians and therefore suggest a need for increased awareness, targeted cancer control, and research to better understand underlying factors.
doi:10.2105/AJPH.2009.163931
PMCID: PMC2837454  PMID: 20147696

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