Caregiver costs and financial burden in caregivers of African American cancer survivors.

PURPOSE: People with cancer commonly rely on loved ones as informal caregivers during and after treatment. Costs related to caregiving and their association with caregiver financial burden are not well understood. METHODS: Results include data from 964 caregivers of African American cancer survivors in the Detroit Research on Cancer Survivors (ROCS) cohort. Caregiving costs include those related to medications, logistics (e.g., transportation), and medical bills. Financial burden measures included caregiver financial resources, strain, and difficulty paying caregiving costs. Prevalence ratios (PR) and 95% confidence intervals (CI) of associations between costs and high financial burden were calculated using modified Poisson models controlling for caregiver characteristics. RESULTS: Caregivers included spouses (36%), non-married partners (8%), family members (48%), and friends (9%). Nearly two-thirds (64%) of caregivers reported costs related to caregiving. Logistical costs were the most common (58%), followed by medication costs (35%) and medical bills (17%). High financial hardship was reported by 38% of caregivers. Prevalence of high financial hardship was 52% (95% CI: 24%, 86%) higher among caregivers who reported any versus no caregiver costs. Associations between caregiver costs and high financial burden were evident for costs related to medications (PR: 1.33, 95% CI: 1.12, 1.58), logistics (PR: 1.57, 95% CI: 1.29, 1.92), and medical bills (PR: 1.57, 95% CI: 1.28, 1.92). CONCLUSIONS: Most caregivers experienced costs related to caregiving, and these costs were associated with higher prevalence of high caregiver financial burden. IMPLICATIONS FOR CANCER SURVIVORS: Informal caregivers experience financial hardship related to cancer along with cancer survivors.

Financial Hardship by Age at Diagnosis Including in Young Adulthood among African American Cancer Survivors.

BACKGROUND: Financial hardship is most common among cancer survivors with the fewest financial resources at diagnosis; however, little is known about the financial outcomes of young adult (YA) survivors (ages 20-39 at diagnosis), despite their having fewer financial reserves than older adults. METHODS: We utilized data from 3,888 participants in the population-based Detroit Research on Cancer Survivors cohort. Participants self-reported several forms of material and behavioral financial hardship (MFH and BFH, respectively). Psychological financial hardship (PFH) was measured using the Comprehensive Score for financial Toxicity (COST) score. Modified Poisson models estimated prevalence ratios (PR) and 95% confidence intervals (CI) for financial hardship by age at diagnosis controlling for demographic, socioeconomic, and cancer-related factors. RESULTS: MFH prevalence was inversely associated with age such that 72% of YA survivors reported MFH, 62% ages 40 to 54, 49% ages 55 to 64, and 33% ages 65 to 79 (PRadjusted YA vs. 65+: 1.75; 95% CI, 1.49-2.04; Ptrend < 0.001). BFH was also more common among YA survivors (26%) than those ages 65 to 79 (20%; PRadjusted: 1.50; 95% CI, 1.08-2.08; Ptrend = 0.019). Age was positively associated with financial wellbeing. COST scores ranged from 20.7 (95% CI, 19.0-22.4) among YA survivors to 27.2 (95% CI, 26.1-28.2) among adults 65 to 79 years old (Ptrend < 0.001). CONCLUSIONS: In this population of African American cancer survivors, MFH and BFH were more common, and PFH was more severe, in YA survivors compared with those diagnosed as older adults. IMPACT: Young adulthood at diagnosis should be considered a risk factor for cancer-related financial hardship and addressed in work designed to reduce the adverse financial impacts of cancer.

Social needs and health-related quality of life among African American cancer survivors: Results from the Detroit Research on Cancer Survivors study.

BACKGROUND: Social needs may affect cancer survivors' health-related quality of life (HRQOL) above and beyond sociodemographic and cancer-related factors. The purpose of this study was to estimate associations between social needs and HRQOL. METHODS: Results included data from 1754 participants in the Detroit Research on Cancer Survivors cohort, a population-based study of African American survivors of breast, colorectal, lung, and prostate cancer. Social needs included items related to food insecurity, utility shutoffs, housing instability, not getting health care because of cost or a lack of transportation, and perceptions of neighborhood safety. HRQOL was measured with the validated Functional Assessment of Cancer Therapy-General (FACT-G). Linear regression models controlled for demographic, socioeconomic, and cancer-related factors. RESULTS: More than one-third of the survivors (36.3%) reported social needs including 17.1% of survivors reported 2 or more. The prevalence of social needs ranged from 14.8% for food insecurity to 8.9% for utility shutoffs. FACT-G score differences associated with social needs were -12.2 (95% confidence interval [CI] to -15.2 to -9.3) for not getting care because of a lack of transportation, -11.3 (95% CI, -14.2 to -8.4) for housing instability, -10.1 (95% CI, -12.7 to -7.4) for food insecurity, -9.8 (95% CI, -12.7 to -6.9) for feeling unsafe in the neighborhood, -8.6 (95% CI, -11.7 to -5.4) for utility shutoffs, and -6.7 (95% CI, -9.2 to -4.1) for not getting care because of cost. CONCLUSIONS: Social needs were common in this cohort of African American cancer survivors and were associated with clinically significant differences in HRQOL. Clinical oncology care and survivorship care planning may present opportunities to screen for and address social needs to mitigate their impact on survivors' HRQOL.

Work changes and individual, cancer-related, and work-related predictors of decreased work participation among African American cancer survivors.

African American cancer survivors disproportionately experience financial difficulties after cancer. Decreased work participation (going from being employed full time to part time or from employed to not employed) can contribute to financial hardship after cancer but employment outcomes among African American cancer survivors have not been well described. This study estimates the prevalence of work changes and identifies factors associated with decreased work participation among African American cancer survivors. We analyzed data from 916 African American breast, colorectal, lung, and prostate cancer survivors who participated in the Detroit Research on Cancer Survivors (ROCS) cohort and were employed before their cancer diagnosis. Modified Poisson models estimated prevalence ratios of decreased work participation and work changes, including changes to hours, duties, or schedules, between diagnosis and ROCS enrollment controlling for sociodemographic and cancer-related factors. Nearly half of employed survivors made changes to their schedules, duties, or hours worked due to cancer and 34.6% took at least one month off of work, including 18% who took at least one month of unpaid time off. More survivors employed full time (vs. part time) at diagnosis were on disability at ROCS enrollment (18.7% vs. 12.6%, P < 0.001), while fewer were unemployed (5.9% vs. 15.7%, P < 0.001). Nearly half (47.5%) of employed survivors decreased work participation. Taking paid time off was not associated with decreased work participation; however, taking unpaid time off and making work changes were associated with prevalence ratios of decreased work participation of 1.29 (95% CI: 1.03, 1.62) and 1.37 (95% CI: 1.07, 1.75), respectively. Employment disruptions are common after a cancer diagnosis. Survivors who take unpaid time off and make other work changes may be particularly vulnerable to experiencing decreased work participation.

Employment Outcomes, Financial Burden, Anxiety, and Depression Among Caregivers of African American Cancer Survivors.

PURPOSE: Caregivers of cancer survivors may need to take time off work or make other employment changes to handle caregiving demands. Work impacts of caregiving, financial burden, and psychosocial outcomes of caregivers are not well understood. METHODS: Results include information from surveys completed by 202 employed caregivers of participants in the Detroit Research on Cancer Survivors cohort, a population-based cohort of African American survivors of breast, colorectal, lung, or prostate cancer. Relationships between work outcomes, financial burden, and anxiety and depression were assessed using logistic regression models controlling for demographic and cancer-related factors. RESULTS: Most (73.8%) caregivers made some employment change. Sixty percent changed their schedule, hours, duties, or employment status; 15.3% took at least 1 month off to provide care, and 38% reported difficulty balancing work and caregiving. Employment changes were strongly associated with difficulty balancing work and caregiving (odds ratio [OR], 5.83; 95% CI, 2.38 to 14.0) and financial burden (OR, 2.12; 95% CI, 1.05 to 4.27). Difficulty balancing work and caregiving was associated with symptoms of anxiety (OR, 1.86; 95% CI, 1.01 to 3.43) and depression (OR, 2.40; 95% CI, 1.16 to 4.96). High (v low) financial burden was associated with symptoms of anxiety (OR, 2.85; 95% CI, 1.01 to 8.06). CONCLUSION: Difficulty balancing work and caregiving is common among caregivers of African American cancer survivors and is associated with symptoms of depression and anxiety. Supports for caregivers facing employment challenges may improve their psychosocial well-being.

Racial differences in patterns of treatment among men diagnosed with de novo advanced prostate cancer: A SEER-Medicare investigation.

PURPOSE: Approximately 5% of men were initially diagnosed with (also referred to as de novo) advanced stage prostate cancer and experience far poorer survival compared to men diagnosed with local or regionally advanced disease. Given the number of new therapies targeting metastatic and castrate-resistant disease, we sought to describe recent treatment patterns by race for de novo AJCC stage IV prostate cancer. METHODS: We used Surveillance, Epidemiology, and End Results (SEER) data linked to Medicare files to identify men aged 66 and older diagnosed in 2004-2014 with advanced prostate cancer, and examined patterns of treatment among all patients and stratified by race/ethnicity. RESULTS: There were 8828 eligible patients identified, and non-Hispanic black (NHB) patients were more likely to go without treatment (P < 0.001) compared to non-Hispanic white (NHW) patients, even after accounting for early mortality and TNM stage. The frequency of nearly all forms of treatment was lower among NHB with the exception of orchiectomy, which was significantly higher (10.1% vs 6.1%, P < 0.001), and the use of the progesterone Megace among Medicare Part D enrollees (24.6% vs 15.0%, P < 0.001). CONCLUSIONS: Results from this study of elderly Medicare patients presenting with advanced stage prostate cancer suggest that NHB men are less likely to pursue aggressive treatment options. With the reduction in screening for prostate cancer, presumably tied to USPSTF recommendations, and the increasing incidence of men diagnosed with de novo metastatic disease, understanding drivers of treatment-related decisions are critical in reducing racial disparities in advanced prostate cancer outcomes.

Race, financial hardship, and limiting care due to cost in a diverse cohort of cancer survivors.

PURPOSE: Estimate prevalence of types of cancer-related financial hardship by race and test whether they are associated with limiting care due to cost. METHODS: We used data from 994 participants (411 white, 583 African American) in a hospital-based cohort study of survivors diagnosed with breast, colorectal, lung, or prostate cancer since January 1, 2013. Financial hardship included decreased income, borrowing money, cancer-related debt, and accessing assets to pay for cancer care. Limiting care included skipping doses of prescribed medication, refusing treatment, or not seeing a doctor when needed due to cost. Logistic regression models controlled for sociodemographic factors. RESULTS: More African American than white survivors reported financial hardship (50.3% vs. 41.0%, p = 0.005) and limiting care (20.0% vs. 14.2%, p = 0.019). More white than African American survivors reported utilizing assets (9.3% vs. 4.8%, p = 0.006), while more African American survivors reported cancer-related debt (30.5% vs. 18.5%, p < 0.001). Survivors who experienced financial hardship were 4.4 (95% CI: 2.9, 6.6) times as likely to limit care as those who did not. Borrowing money, cancer-related debt, and decreased income were each independently associated with limiting care, while accessing assets was not. CONCLUSIONS: The prevalence of some forms of financial hardship differed by race, and these were differentially associated with limiting care due to cost. IMPLICATIONS FOR CANCER SURVIVORS: The ability to use assets to pay for cancer care may protect survivors from limiting care due to cost. This has differential impacts on white and African American survivors.

Financial Hardship and Quality of Life among African American and White Cancer Survivors: The Role of Limiting Care Due to Cost.

BACKGROUND: Financial hardship is common among cancer survivors and is associated with both limiting care due to cost and with poor health-related quality of life (HRQOL). This study estimates the association between limiting care due to cost and HRQOL in a diverse population of cancer survivors and tests whether limiting care mediates the association between financial hardship and HRQOL. METHODS: We used data from 988 participants (579 African American, 409 white) in the Detroit Research on Cancer Survivors (ROCS) pilot, a hospital-based cohort of breast, colorectal, lung, and prostate cancer survivors. We assessed associations between financial hardship, limiting care, and HRQOL [measured by the Functional Assessment of Cancer Therapy-General (FACT-G)] using linear regression and mediation analysis controlling for demographic, socioeconomic, and cancer-related variables. RESULTS: FACT-G scores were 4.2 [95% confidence interval (CI), 2.0-6.4] points lower among survivors who reported financial hardship compared with those who did not in adjusted models. Limiting care due to cost was associated with a -7.8 (95% CI, -5.1 to -10.5) point difference in FACT-G scores. Limiting care due to cost explained 40.5% (95% CI, 25.5%-92.7%) of the association between financial hardship and HRQOL overall, and 50.5% (95% CI, 29.1%-188.1%) of the association for African American survivors. CONCLUSIONS: Financial hardship and limiting care due to cost are both associated with lower HRQOL among diverse cancer survivors, and this association is partially explained by limiting care due to cost. IMPACT: Actions to ensure patients with cancer can access appropriate care could lessen the impact of financial hardship on HRQOL.

Risk of incident claims for chemotherapy-induced peripheral neuropathy among women with breast cancer in a Medicare population.

BACKGROUND: Chemotherapy-induced peripheral neuropathy (CIPN) is a common and disabling consequence of neurotoxic therapies, yet factors that modulate the development and clinical impact of CIPN are poorly understood. This epidemiological analysis identifies risk factors for the incidence of CIPN. METHODS: This retrospective analysis of Surveillance, Epidemiology, and End Results-Medicare data examined predictors of incident CIPN claims among 11,149 women aged 66 years or older with American Joint Commission on Cancer (AJCC) stage II to IV breast cancer (and no secondary cancer diagnosis or preexisting neuropathy) who received chemotherapy. RESULTS: Overall, new CIPN claims occurred for 8.3% of patients within 1 year of starting chemotherapy. Risk emerged approximately 3 months after the start of chemotherapy and increased throughout 1 year. Paclitaxel as part of first-line therapy increased CIPN risk 2.7-fold in comparison with nonneurotoxic agents (15.9% vs 5.0%), with lower incidence rates for carboplatin and paclitaxel (11.9%), carboplatin and docetaxel (9.3%), carboplatin alone (7.7%), and docetaxel alone (6.6%). The CIPN incidence rate was higher for women who at the time of their breast cancer diagnosis were relatively young (within this Medicare sample), were at AJCC stage II or III, were married or had an equivalent status, and had fewer comorbidities, but it did not differ by race/ethnicity or poverty level. CONCLUSIONS: These Medicare claims database findings indicate that women aged 66 years or older with breast cancer are susceptible to CIPN from taxane and/or platinum compounds, with risk emerging approximately 3 months into treatment. Prospective studies of symptom emergence and clinical response (eg, stopping chemotherapy and adjunctive treatments) are indicated to determine how best to inform patients of this risk and to manage CIPN in this population.

Racial Disparities in Lung Cancer Survival: The Contribution of Stage, Treatment, and Ancestry.

INTRODUCTION: Lung cancer is a leading cause of cancer-related death worldwide. Racial disparities in lung cancer survival exist between blacks and whites, yet they are limited by categorical definitions of race. We sought to examine the impact of African ancestry on overall survival among blacks and whites with NSCLC cases. METHODS: Incident cases of NSCLC in blacks and whites from the prospective Southern Community Cohort Study (N = 425) were identified through linkage with state cancer registries in 12 southern states. Vital status was determined by linkage with the National Death Index and Social Security Administration. We evaluated the impact of African ancestry (as estimated by using genome-wide ancestry-informative markers) on overall survival by calculating the time-dependent area under the curve (AUC) for Cox proportional hazards models, adjusting for relevant covariates such as stage and treatment. We replicated our findings in an independent population of NSCLC cases in blacks. RESULTS: Global African ancestry was not significantly associated with overall survival among NSCLC cases. There was no change in model performance when Cox proportional hazards models with and without African ancestry were compared (AUC = 0.79 for each model). Removal of stage and treatment reduced the average time-dependent AUC from 0.79 to 0.65. Similar findings were observed in our replication study. CONCLUSIONS: Stage and treatment are more important predictors of survival than African ancestry is. These findings suggest that racial disparities in lung cancer survival may disappear with similar early detection efforts for blacks and whites.

Socioeconomic Status in Relation to the Risk of Ovarian Cancer in African-American Women: A Population-Based Case-Control Study.

We investigated the association between socioeconomic status and ovarian cancer in African-American women. We used a population-based case-control study design that included case patients with incident ovarian cancer (n = 513) and age- and area-matched control participants (n = 721) from 10 states who were recruited into the African American Cancer Epidemiology Study from December 2010 through December 2014. Questionnaires were administered via telephone, and study participants responded to questions about several characteristics, including years of education, family annual income, and risk factors for ovarian cancer. After adjustment for established ovarian cancer risk factors, women with a college degree or more education had an odds ratio of 0.71 (95% confidence interval (CI): 0.51, 0.99) when compared with those with a high school diploma or less (P for trend = 0.02); women with family annual incomes of $75,000 or more had an odds ratio of 0.74 (95% CI: 0.47, 1.16) when compared with those with incomes less than $10,000 (P for trend = 0.055). When these variables were dichotomized, compared with women with a high school diploma or less, women with more education had an adjusted odds ratio of 0.72 (95% CI: 0.55, 0.93), and compared with women with an income less than $25,000, women with higher incomes had an adjusted odds ratio of 0.86 (95% CI: 0.66, 1.12). These findings suggest that ovarian cancer risk may be inversely associated with socioeconomic status among African-American women and highlight the need for additional evidence to more thoroughly characterize the association between socioeconomic status and ovarian cancer.

Linkage analysis of chromosome 4 in families with familial pancreatic cancer.

BACKGROUND: Approximately 10% of pancreatic ductal adenocarcinomas have a familial basis. While a small portion of this familial clustering can be explained by inherited mutations in known genes (BRCA2, p16/CDKN2A, PRSS1, and STK11), the genetic basis for the majority of this familial clustering remains unknown. In addition, a pancreatic cancer susceptibility locus has been reported to be linked to chromosome 4q32-34 in a single family having a high penetrance of early-onset pancreatic ductal adenocarcinoma and pancreatic insufficiency. The goal of this study is to determine if linkage to chromosome 4q exists in our series of well-characterized families with idiopathic familial pancreatic cancer enrolled in the Pancreatic Cancer Genetic Epidemiology Consortium (PACGENE). METHODS: Parametric and nonparametric linkage analyses were performed using 21 microsatellite markers on chromosome 4 on affected individuals with pancreatic cancer from 42 familial pancreatic cancer kindreds. RESULTS: Markov Chain Monte Carlo parametric and nonparametric linkage analyses using SIMWALK2 as well as nonparametric linkage analysis using MERLIN did not provide strong evidence of linkage in this region (LOD < 1.0). Only one family provided a multipoint LOD score of >0.5 adjacent to the reported region. CONCLUSIONS: Our results do not support linkage to the 4q32-34 region in the majority of our familial pancreatic cancer kindreds. However, because multiple pancreatic cancer susceptibility genes are likely to exist, it is possible that a subset of the families in this study may be linked to this region.