Material financial hardship and insurance-related experiences among Utah's rural and urban cancer survivors.

PURPOSE: Describe material financial hardship (e.g., using savings, credit card debt), insurance, and access to care experienced by Utah cancer survivors; investigate urban-rural differences in financial hardship. METHODS: Cancer survivors were surveyed from 2018 to 2021 about their experiences with financial hardship, access to healthcare, and job lock (insurance preventing employment changes). Weighed percentage responses, univariable and multivariable logistic regression models for these outcomes compared differences in survivors living in rural and urban areas based on Rural-Urban Commuting Area Codes. RESULTS: The N = 1793 participants were predominantly Non-Hispanic White, female, and 65 or older at time of survey. More urban than rural survivors had a college degree (39.8% vs. 31.0%, p = 0.04). Overall, 35% of survivors experienced ≥ 1 financial hardship. In adjusted analyses, no differences were observed between urban and rural survivors for: material financial hardship, the overall amount of hardship reported, insurance status at survey, access to healthcare, or job lock. Hispanic rural survivors were less likely to report financial hardship than Hispanic urban survivors (odds ratio (OR) = 0.24, 95%CI = 0.08-0.73)). Rural survivors who received chemo/immune therapy as their only treatment were more likely to report at least one instance of financial hardship than urban survivors (OR = 2.72, 95%CI = 1.08-6.86). CONCLUSIONS: The relationship between rurality and financial hardship among survivors may be most burdensome for patients whose treatments require travel or specialty medication access. IMPLICATIONS FOR CANCER SURVIVORS: The impact of living rurally on financial difficulties after cancer diagnoses is complex. Features of rurality that may alter financial difficulty after a cancer diagnosis may vary geographically and instead of considering rurality as a stand-alone factor, these features should be investigated independently.

Cancer survivors' financial hardship and their caregivers' employment: results from a statewide survey.

PURPOSE: Many caregivers take paid and/or unpaid time off work, change from full-time to part-time, or leave the workforce. We hypothesized that cancer survivor-reported material hardship (e.g., loans, bankruptcy), behavioral hardship (e.g., skipping care/medication due to cost), and job lock (i.e., staying at a job for fear of losing insurance) would be associated with caregiver employment changes. METHODS: Adult cancer survivors (N = 627) were surveyed through the Utah Cancer Registry in 2018-2019, and reported whether their caregiver had changed employment because of their cancer (yes, no). Material hardship was measured by 9 items which we categorized by the number of instances reported (0, 1-2, and ≥ 3). Two items represented both behavioral hardship (not seeing doctor/did not take medication because of cost) and survivor/spouse job lock. Odds ratios (OR) were estimated using survey-weighted logistic regression to examine the association of caregiver employment changes with material and behavioral hardship and job lock, adjusting for cancer and sociodemographic factors. RESULTS: There were 183 (29.2%) survivors reporting their caregiver had an employment change. Survivors with ≥ 3 material hardships (OR = 3.13, 95%CI 1.68-5.83), who skipped doctor appointments (OR = 2.88, 95%CI 1.42-5.83), and reported job lock (OR = 2.05, 95%CI 1.24-3.39) and spousal job lock (OR = 2.19, 95%CI 1.17-4.11) had higher odds of caregiver employment changes than those without these hardships. CONCLUSIONS: Caregiver employment changes that occur because of a cancer diagnosis are indicative of financial hardship. IMPLICATIONS FOR CANCER SURVIVORS: Engaging community and hospital support for maintenance of stable caregiver employment and insurance coverage during cancer may lessen survivors' financial hardship.

Feasibility of Capturing Cancer Treatment Data in the Utah All-Payer Claims Database.

PURPOSE: Incompleteness of treatment data is a recognized limitation of cancer registry data. An all-payer claims database (APCD) is a tool that states use to capture health care information across systems and payer. We linked the Utah Cancer Registry (UCR) records to Utah's statewide APCD and evaluated how this linkage led to improvements in the capture of cancer treatment information. METHODS: We linked cancers diagnosed and reported to the UCR with Utah APCD claims for the calendar years 2013 and 2014 using LinkPlus Software. For patients with breast or colorectal cancers, manual abstraction was completed to provide a gold-standard comparison for the treatment data obtained from the claims. RESULTS: Among 10,759 reportable cancer occurrences linked to the APCD, the claims identified additional patients with cancer who received therapies that had been unknown to the registry, increasing the proportion treated with chemotherapy from 23.7% to 27.6%, hormone therapy from 14.1% to 18.8%, immunotherapy from 4.3% to 13.2%, and radiation therapy from 24.9% to 27.5%. The APCD increased the sensitivity of treatment variables compared with the abstraction gold standard. Notably, sensitivity of hormonal therapy for breast cancer increased from 78.6% to 95.2% when augmented with APCD claims data. However, the APCD alone did not achieve as high specificity for treatment data as did the data collected through traditional registry methods. CONCLUSIONS: This is the first study, to our knowledge, showing that linking cancer registry data with a statewide claims database that covers multiple insurance companies improves cancer treatment data collection. Linking of cancer registry and APCD data can improve comprehensiveness of cancer registry treatment data.

Linkage between Utah All Payers Claims Database and Central Cancer Registry.

OBJECTIVE: To evaluate the linkage of claims from the Utah All Payers Claims Database (APCD) and Utah Cancer Registry (UCR). DATA SOURCES: Secondary data from 2013 and 2014 Utah APCD and 2013 UCR cases. STUDY DESIGN: This is a descriptive analysis of the quality of linkage between APCD claims data and cancer registry cases. DATA COLLECTION/EXTRACTION METHODS: We used the LinkPlus software to link Utah APCD and UCR data. PRINCIPAL FINDINGS: We were able to link 82.4 percent (9441/11 453) of the UCR reportable cancer cases with APCD claims. Of those linked, 66 percent were perfect matches. CONCLUSIONS: The quality of identifiers is high, evidence that claims data can potentially supplement cancer registry data for use in research.

Disparities in cancer survival and incidence by metropolitan versus rural residence in Utah.

Cancer disparities in rural and frontier communities are an important issue in Utah because much of Utah is sparsely populated. The aims of this study were to investigate whether there are differences in the cancer incidence and 5-year survival rates in Utah by metropolitan/rural residence and to investigate disparities in distributions of cancer risk factors. We used cancer registry records to identify patients diagnosed with a first primary cancer in Utah between 2004 and 2008. We estimated 5-year survival and incidence rates. The Cox proportional hazards model was used to estimate hazard ratios (HRs) for the risk of death. There were 32,498 (86.9%) patients with cancer who lived in metropolitan counties and 4906 (13.1%) patients with cancer who lived in rural counties at the time of cancer diagnosis. Patients with cancer from rural counties were more likely to be older, American Indian/Alaskan Native, non-Hispanic, male, and diagnosed at higher stage. Rural residents had a five-year relative survival that was 5.2% lower than metropolitan residents and a 10% increase in risk of death (HR = 1.10, 95% CI = 1.03, 1.18) after adjustment for multiple factors. Overall, the cancer incidence rates in rural counties were lower by 11.9 per 100,000 per year (449.2 in rural counties vs. 461.1 in metropolitan counties). Cancer patients living in rural counties of Utah had different demographic characteristics as well as differences in incidence and survival rates. Further studies with individual-level data are necessary to investigate the reasons behind these differences in cancer incidence and survival to reduce disparities.

Unstaged cancer: Long-term decline in incidence by site and by demographic and socioeconomic characteristics.

PURPOSE: The study of trends in stage at diagnosis contributes to understand disease burden and the effects of cancer control activities. However, a proportion of cancers reported to registries have insufficient information to assign stage. The limited research addressing unstaged cancers has noted racial and socioeconomic disparities. Long-term incidence trends for unstaged cancers have not been described. We examined long-term trends in diagnosis of unstaged cancers in the U.S. Surveillance, Epidemiology and End Results (SEER) reporting areas. METHODS: Incidence of unstaged invasive cancers for primary sites that have a staging scheme was analyzed for the years 1992-2011. JoinPoint regression was used to describe incidence rate trends of unstaged cancers, with analysis stratified by cancer site and by socioeconomic and demographic variables. RESULTS: From 1992 to 1996, 8.6% of invasive cancers were unstaged. A steep decline in the incidence of unstaged cancers, represented by an annual percent change (APC) of -9.16%, was observed from 1997 to 2001, followed by a modest decline. By the end of the study period, 2007-2011, unstaged cancers represented 4.9% of invasive cancers. Unstaged cancers are disproportionately more common for older individuals and those in lower socioeconomic communities. CONCLUSION: The incidence of unstaged cancers decreased markedly over the period studied. Change in ability to assign stage was seen, possibly related to increased use of advanced imaging like PET scans, and should be considered when evaluating changes in cancer stage distributions over time.

Transition to Independence: Characteristics and Outcomes of Mentored Career Development (KL2) Scholars at Clinical and Translational Science Award Institutions.

PURPOSE: To describe the transition from mentored to independent research funding for clinical and translational scholars supported by institutional KL2 Mentored Career Development programs. METHOD: In 2013, faculty leaders at Clinical and Translational Science Award institutions completed an online survey, reporting characteristics of scholars in their KL2 programs from 2006 to 2013. The primary outcome variable was a report that the scholar had received independent funding as a principal investigator. Data analysis included descriptive summaries and mixed-effects regression models. RESULTS: Respondents from 48 institutions (of 62 eligible; 77%) provided information about 914 KL2 scholars. Of those, 620 (68%) were medical doctors, 114 (12%) had other clinical training, and 177 (19%) were nonclinician PhDs. Fifty-three percent (487) were female; 12% (108/865) were members of racial or ethnic groups underrepresented in medicine (URM). After completing KL2 training, 96% (558/582) remained engaged in research. Among scholars who completed KL2 training two or more years earlier, 39% (149/374) received independent funding. Independent funding was from non-National Institutes of Health (NIH) sources (120 scholars) more often than from NIH (101 scholars). The odds of a nonclinician attaining independent funding were twice those of a clinician (odds ratio 2.05; 95% confidence interval 1.11-3.78). Female and URM scholars were as likely as male and non-URM scholars to attain independent funding. CONCLUSIONS: KL2 programs supported the transition to independent funding for clinical and translational scientists. Female and URM scholars were well represented. Future studies should consider non-NIH funding sources when assessing the transition to research independence.

Baby Boomers and Birth Certificates: Early-Life Socioeconomic Status and Cancer Risk in Adulthood.

BACKGROUND: Early-life socioeconomic status (SES) may play a role in cancer risk in adulthood. However, measuring SES retrospectively presents challenges. Parental occupation on the birth certificate is a novel method of ascertaining early-life SES that has not been applied in cancer epidemiology. METHODS: For a Baby-Boom cohort born from 1945-1959 in two Utah counties, individual-level Nam-Powers SES (Np-SES) was derived from parental industry/occupation reported on birth certificates. Neighborhood SES was estimated from average household income of census tract at birth. Cancer incidence was determined by linkage to Utah Cancer Registry records through the Utah Population Database. Hazard ratios (HR) for cancer risk by SES quartile were estimated using Cox proportional hazards regression. RESULTS: Females with low Np-SES at birth had lower risk of breast cancer compared with those in the highest Np-SES group [HRQ1/Q4 = 0.83; 95% confidence interval (CI), 0.72-0.97; HRQ2/Q4 = 0.81; 95% CI, 0.69-0.96]. Np-SES was inversely associated with melanoma (HRQ1/Q4 = 0.81; 95% CI, 0.67-0.98) and prostate cancer (HRQ1/Q4 = 0.70; 95% CI, 0.56-0.88). Women born into lower SES neighborhoods had significantly increased risk for invasive cervical cancer (HRQ1/Q4 = 1.44; 95% CI, 1.12-1.85; HRQ2/Q4 = 1.33; 95% CI, 1.04-1.72). Neighborhood SES had similar effects for melanoma and prostate cancers, but was not associated with female breast cancer. We found no association with SES for pancreas, lung, and colon and rectal cancers. CONCLUSIONS: Individual SES derived from parental occupation at birth was associated with altered risk for several cancer sites. IMPACT: This novel methodology can contribute to improved understanding of the role of early-life SES on cancer risk. Cancer Epidemiol Biomarkers Prev; 26(1); 75-84. ©2016 AACR.

Sustaining the Clinical and Translational Research Workforce: Training and Empowering the Next Generation of Investigators.

There is mounting concern that clinician-scientists are a vanishing species and that the pipeline for clinical and translational research (CTR) investigators is in jeopardy. For the majority of current junior CTR investigators, the career path involves first obtaining a National Institutes of Health (NIH)-funded K-type career development award, particularly K08 and K23, and subsequently an NIH R01. This transition, popularly referred to as K2R, is a major hurdle with a low success rate and gaps in funding. In this Perspective, the authors identify factors that facilitate K2R transition and important aspects of increasing and sustaining the pipeline of CTR investigators. They also highlight significant differences in success rates of women and those underrepresented in biomedical research. Early career exposure to research methodology, protected time, multidisciplinary mentoring, and institutional "culture shift" are important for fostering and rewarding team science. Mentoring is the single most important contributor to K2R success, and emerging evidence suggests that formal mentor training and team mentoring are effective. Leadership training can empower junior investigators to thrive as independent CTR investigators. Future research should focus on delineating the difference between essential and supplemental factors to achieve this transition, and mentoring methods that foster success, including those that promote K2R transition of women and those underrepresented in biomedical research. The Clinical and Translational Science Awards National Consortium is well positioned to test existing models aimed at shortening the time frame, increasing the rate of K2R transition, and identifying strategies that improve success.

Geography and the burden of care in pediatric cancers.

BACKGROUND: Childhood cancers typically require rigorous treatment at specialized centers in urban areas, which can create substantial challenges for families residing in remote communities. We evaluated the impact of residence and travel time on the burden of care for families of childhood cancer patients. PROCEDURE: We conducted a cross-sectional, self-administered survey of 354 caregivers of pediatric cancer patients at a children's hospital serving a seven state area. Measures included the impact of cancer treatment on relocation, employment, schooling, and finances. We evaluated these domains by rural/urban residence and travel time (>1 hour and >2 hours) to the hospital in multivariable regression models. RESULTS: Of the 29% of caregivers who reported moving residences as their child was diagnosed, 33% reported that the move was due to their child's cancer. Rural and remote (e.g., >1 hour travel time) caregivers missed more days of work during the first month after diagnosis than did urban and local caregivers, however, these differences did not persist over the first 6 months of therapy. One-third of caregivers reported quitting or changing jobs as a direct result of their child being diagnosed with cancer. Rural respondents had greater out-of-pocket travel expenses and reported a significantly greater perceived financial burden. Rural patients missed more school days and were at an increased risk of having to repeat a grade. CONCLUSIONS: Childhood cancer has an appreciable impact on the lives of patients and caregivers. The burden is greater for those living far from a treatment center.

Social networks, social support, and burden in relationships, and mortality after breast cancer diagnosis in the Life After Breast Cancer Epidemiology (LACE) study.

Larger social networks have been associated with lower breast cancer mortality. The authors evaluated how levels of social support and burden influenced this association. We included 2,264 women from the Life After Cancer Epidemiology study who were diagnosed with early-stage, invasive breast cancer between 1997 and 2000, and provided data on social networks (spouse or intimate partner, religious/social ties, volunteering, time socializing with friends, and number of first-degree female relatives), social support, and caregiving. 401 died during a median follow-up of 10.8 years follow-up with 215 from breast cancer. We used delayed entry Cox proportional hazards regression to evaluate associations. In multivariate-adjusted analyses, social isolation was unrelated to recurrence or breast cancer-specific mortality. However, socially isolated women had higher all-cause mortality (HR = 1.34, 95 % CI: 1.03-1.73) and mortality from other causes (HR = 1.79, 95 % CI: 1.19-2.68). Levels of social support and burden modified associations. Among those with low, but not high, levels of social support from friends and family, lack of religious/social participation (HR = 1.58, 95 % CI: 1.07-2.36, p = 0.02, p interaction = 0.01) and lack of volunteering (HR = 1.78, 95 % CI: 1.15-2.77, p = 0.01, p interaction = 0.01) predicted higher all-cause mortality. In cross-classification analyses, only women with both small networks and low levels of support (HR = 1.61, 95 % CI: 1.10-2.38) had a significantly higher risk of mortality than women with large networks and high levels of support; women with small networks and high levels of support had no higher risk of mortality (HR = 1.13, 95 % CI: 0.74-1.72). Social networks were also more important for caregivers versus noncaregivers. Larger social networks predicted better prognosis after breast cancer, but associations depended on the quality and burden of family relationships.

Factors associated with response to a follow-up postal questionnaire in a cohort of American Indians.

OBJECTIVE: The aim of the study was to collect pilot data on response rates to a follow-up postal questionnaire in a cohort of American Indians living in the Southwestern United States. We tested the effect of questionnaire length on response. METHODS: Cohort members were American Indian adults aged 18 and over who completed the baseline study visit. Study participants (N=1587), cohort members who completed the baseline study visit during the first year of enrollment, were randomized into two groups to receive either an 18-page or 3-page follow-up postal questionnaire. Data were collected between October 2005 and March 2006. RESULTS: The response rates after two questionnaire mailings and a reminder postcard were significantly higher for the short versus the long (56.2%, 48.1% p= < 0.01) questionnaire. Being female and being aged 50 or older were associated with returning a completed questionnaire. A reminder postcard and second mailing improved response by 11.7% and 13.4% respectively. CONCLUSIONS: These results show that a postal questionnaire can be used in a cohort of American Indians living in the Southwest, but suggest that questionnaires should be short and repeat mailings are needed.

Population-based case-control study of diabetes and breast cancer risk in Hispanic and non-Hispanic White women living in US southwestern states.

Diabetes mellitus has been associated with breast cancer, although no studies appear to have adequately assessed the association in Hispanic women, a population with a high prevalence of diabetes. The authors investigated this association in a population-based case-control study of Hispanic and non-Hispanic White women living in the southwestern United States. Breast cancer cases diagnosed in 1999-2004 were identified through state cancer registries (1,526 non-Hispanic Whites, 798 Hispanics). Age- and ethnicity-matched controls (1,599 non-Hispanic Whites, 924 Hispanics) were selected from commercial mailing lists and driver's license and Social Security records. Diabetes history was assessed through interviewer-administered questionnaires. Odds ratios and 95% confidence intervals were calculated using logistic regression, adjusting for age, body mass index at age 15 years, and parity. Having any type of diabetes was not associated with breast cancer overall (odds ratio = 0.94, 95% confidence interval: 0.78, 1.12). Type 2 diabetes was observed among 19% of Hispanics and 9% of non-Hispanic Whites but was not associated with breast cancer in either group. Gestational diabetes was inversely associated with breast cancer in both ethnic groups, especially when first diagnosed at age < or =35 years (odds ratio = 0.54, 95% confidence interval: 0.37, 0.79). In this study, diabetes was not associated with breast cancer overall, although the inverse association with gestational diabetes warrants further investigation.

Recruiting Hispanic women for a population-based study: validity of surname search and characteristics of nonparticipants.

Conducting research on the health of Hispanic populations in the United States entails challenges of identifying individuals who are Hispanic and obtaining good study participation. In this report, identification of Hispanics using a surname search and ethnicity information collected by cancer registries was validated, compared with self-report, for breast cancer cases and controls in Utah and New Mexico. Factors influencing participation by Hispanics in a study interview in 2000-2005 were evaluated. The positive predictive value of identification as Hispanic by cancer registry records and surname search was 82.3% for cases and 73.2% for controls. Hispanics who were correctly classified differed from those who were misclassified, reporting lower language acculturation and educational attainment. Older age was positively associated with success in contacting Hispanic controls (p(trend) < 0.0001) but negatively associated with cooperation with the interview (p(trend) < 0.0001). Community characteristics described by US Census data, including income, education, and urban/rural residence, did not significantly influence participation by Hispanic cases or controls. The authors conclude that a surname search efficiently identifies Hispanics, although individuals identified using this method are not completely representative. Recruitment of Hispanic cases and controls does not appear to be affected by selection bias related to community characteristics.