Social Justice and Equity: Why Older Adults With Cancer Belong-A Life Course Perspective.

The population of older adults with cancer in the United States is rapidly increasing, which will have a substantial impact on the oncology and public health workforces across the cancer continuum, from prevention to end of life. Unfortunately, inequities in existing social structures that cause increased psychosocial stressors have led to disparities in the incidence of cancer and the morbidity and mortality of cancer for individuals from marginalized backgrounds. It is imperative that older adults, especially those from historically marginalized backgrounds, be adequately represented in all stages of cancer research to address health inequities. Continued efforts and progress toward achieving social justice and health equity require a deeper commitment to and better understanding of the impact of social determinants of health within the cancer domain. Undoubtedly, a more holistic and integrated view that extends beyond the biologic and genetic factors of health must be adopted for health entities to recognize the critical role of environmental, behavioral, and social determinants in cancer health disparities. Against this backdrop, this paper uses a life course approach to present a multifactorial framework for understanding and addressing cancer disparities in an effort to advance social justice and health equity for racially and ethnically diverse older adults.

Childhood socioeconomic status, healthy lifestyle, and colon cancer risk in a cohort of U.S. women.

Colon cancer is the third most common cancer in the US. While the socioeconomic status -health gradient has been established, findings linking adult socioeconomic status to colon cancer incidence specifically are mixed. Considering childhood socioeconomic status (CSES) and relevant risk factors, including related lifestyle behaviors, may provide more insight. At baseline in 1976, women from the Nurses' Health Study reported CSES as defined by parents' occupation when participants were age 16. Lifestyle-related factors (i.e., physical activity, body mass index, diet, alcohol, and tobacco consumption) were self-reported in 1988 or 1990, and every 4 years thereafter until 2016. Cox regression models estimated hazards ratio (HR) and 95% confidence intervals (CIs) of adopting an unhealthy lifestyle (N = 22,507) and developing colon cancer (N = 100,921) between 1976 and 2016, separately, across parents' occupation levels. During follow-up, 2342 cases of colon cancer occurred. Compared to women whose parents were white collar workers, women whose parents were farmers had lower colon cancer risk (HR = 0.84; 95%CI: 0.72, 0.98), but no differences were evident for women whose parents were blue collar workers in models adjusting for age and familial history of colon cancer. Using the same comparison group, risk of adopting an unhealthy lifestyle over follow-up was not significantly different in women with farmer parents (HR = 0.96, 95% CI: 0.91, 1.02), while children of blue collar workers had slightly greater risk (HR = 1.07; 95%CI: 1.03, 1.12) in age-adjusted models. These findings suggest the impact of CSES on colon cancer risk is modest and varies across outcomes and occupational status.

Financial burden for caregivers of adolescents and young adults with cancer.

OBJECTIVE: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. METHODS: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. RESULTS: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. CONCLUSIONS: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.

Stakeholder-informed conceptual framework for financial burden among adolescents and young adults with cancer.

BACKGROUND: Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure. METHODS: In-depth concept elicitation interviews were conducted with a purposive-selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups. RESULTS: Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost "ripple effects"; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long-lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs. CONCLUSIONS: Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient-reported measure of financial burden among AYA cancer survivors.

Systematic review of financial burden assessment in cancer: Evaluation of measures and utility among adolescents and young adults and caregivers.

The cost of cancer care is rising and represents a stressor that has significant and lasting effects on quality of life for many patients and caregivers. Adolescents and young adults (AYAs) with cancer are particularly vulnerable. Financial burden measures exist but have varying evidence for their validity and reliability. The goal of this systematic review is to summarize and evaluate measures of financial burden in cancer and describe their potential utility among AYAs and their caregivers. To this end, the authors searched PubMed, Embase, the Cochrane Library, CINAHL, and PsycINFO for concepts involving financial burden, cancer, and self-reported questionnaires and limited the results to the English language. They discarded meeting abstracts, editorials, letters, and case reports. The authors used standard screening and evaluation procedures for selecting and coding studies, including consensus-based standards for documenting measurement properties and study quality. In all, they screened 7250 abstracts and 720 full-text articles to identify relevant articles on financial burden. Eighty-six articles met the inclusion criteria. Data extraction revealed 64 unique measures for assessing financial burden across material, psychosocial, or behavioral domains. One measure was developed specifically for AYAs, and none were developed for their caregivers. The psychometric evidence and study qualities revealed mixed evidence of methodological rigor. In conclusion, several measures assess the financial burden of cancer. Measures were primarily designed and evaluated in adult patient populations with little focus on AYAs or caregivers despite their increased risk of financial burden. These findings highlight opportunities to adapt and test existing measures of financial burden for AYAs and their caregivers.

Social Isolation Associated with Future Health Care Utilization.

Social isolation among individuals ages 65 years and older is associated with poor health outcomes. However, little is known about health care utilization patterns of socially isolated individuals. This retrospective, observational study evaluated associations between social isolation and hospital and emergency department (ED) utilization among Medicare patients ages 65 years and older. In a cohort of 18,557 Medicare members age 65 years and older at Kaiser Permanente Northwest, the authors compared rates of hospitalization and ED visits in the 12 months following a baseline survey between respondents who reported feeling lonely or socially isolated and those who did not, controlling for demographic and health variables and utilization in the 12 months prior to the survey. Statistical analysis was conducted in February 2020. In adjusted models, those who reported "sometimes" experiencing social isolation were more likely to have at least 1 hospital admission (odds ratio [ORsometimes]: 1.17, 95% confidence interval [CI]: 1.01-1.35, P = 0.04), than those who "rarely" or "never" experienced social isolation. Those who experienced social isolation "sometimes" or "often/always" were more likely to have at least 1 ED visit (ORsometimes: 1.28, 95% CI: 1.15-1.41, P < 0.0001, and ORoften/always: 1.51, 95% CI: 1.25-1.84, P < 0.0001, respectively) than those who "rarely" or "never" experienced social isolation. These findings suggest that self-reported social isolation may be predictive of future hospital admissions and ED utilization. Research is needed to determine how addressing social isolation needs within the health care system affects health care utilization and health outcomes.

Racial-ethnic differences in prevalence of social determinants of health and social risks among middle-aged and older adults in a Northern California health plan.

BACKGROUND: Social determinants of health (SDoHs) and social risks (SRs) have been associated with adverse health and healthcare utilization and racial/ethnic disparities. However, there is limited information about the prevalence of SRs in non-"safety net" adult populations and how SRs differ by race/ethnicity, age, education, and income. METHODS: We analyzed weighted survey data for 16,247 White, 1861 Black, 2895 Latino, 1554 Filipino, and 1289 Chinese adults aged 35 to 79 who responded to the 2011 or 2014/2015 Kaiser Permanente Northern California Member Health Survey. We compared age-standardized prevalence estimates of SDoHs (education, household income, marital status) and SRs (financial worry, cost-related reduced medication use and fruit/vegetable consumption, chronic stress, harassment/discrimination, health-related beliefs) across racial/ethnic groups for ages 35 to 64 and 65 to 79. RESULTS: SDoHs and SRs differed by race/ethnicity and age group, and SRs differed by levels of education and income. In both age groups, Blacks, Latinos, and Filipinos were more likely than Whites to be in the lower income category and be worried about their financial situation. Compared to Whites, cost-related reduced medication use was higher among Blacks, and cost-related reduced fruit/vegetable consumption was higher among Blacks and Latinos. Younger adults were more likely than older adults to experience chronic stress and financial worry. Racial/ethnic disparities in income were observed within similar levels of education. Differences in prevalence of SRs by levels of education and income were wider within than across racial/ethnic groups. CONCLUSIONS: In this non-"safety net" adult health plan population, Blacks, Latinos, and Filipinos had a higher prevalence of social risks than Whites and Chinese, and prevalence of social risks differed by age group. Our results support the assessment and EHR documentation of SDoHs and social risks and use of this information to understand and address drivers of racial/ethnic disparities in health and healthcare use.

Material-Psychosocial-Behavioral Aspects of Financial Hardship: A Conceptual Model for Cancer Prevention.

Risk of cancer increases with age; and socioeconomic factors have been shown to be relevant for (predictive of) cancer risk-related behaviors and cancer early detection and screening. Yet, much of this research has relied on traditional measures of socioeconomic status (SES) to assess socioeconomic circumstances, which limits our understanding of the various pathways through which the socioeconomic environment affects cancer risk. Research on hardship and health suggests that concepts of financial hardship can uncover socioeconomic factors influencing health behaviors over and above traditional SES measures. Thus, consistently including measures of financial hardship in cancer prevention research and practice may help us further explicate the pathway between socioeconomic circumstances and cancer risk-related behaviors and cancer screening among older adults and help us identify intervention and policy targets. We present a conceptual model of financial hardship that can be applied to cancer prevention research among older adults to provide guidance on the conceptualization, measurement, and intervention on financial hardship in this population. The conceptual model advances a research agenda that calls for greater conceptual and measurement clarity of the material, psychosocial, and behavioral aspects of the socioeconomic environment to inform the identification of potentially modifiable socioeconomic factors associated with cancer risk-related behaviors among older adults.

Financial Hardships Experienced by Cancer Survivors: A Systematic Review.

Background: With rising cancer care costs, including high-priced cancer drugs, financial hardship is increasingly documented among cancer survivors in the United States; research findings have not been synthesized. Methods: We conducted a systematic review of articles published between 1990 and 2015 describing the financial hardship experienced by cancer survivors using PubMed, Embase, Scopus, and CINAHL databases. We categorized measures of financial hardship into: material conditions (eg, out-of-pocket costs, productivity loss, medical debt, or bankruptcy), psychological responses (eg, distress or worry), and coping behaviors (eg, skipped medications). We abstracted findings and conducted a qualitative synthesis. Results: Among 676 studies identified, 45 met the inclusion criteria and were incorporated in the review. The majority of the studies (82%, n = 37) reported financial hardship as a material condition measure; others reported psychological (7%, n = 3) and behavioral measures (16%, n = 7). Financial hardship measures were heterogeneous within each broad category, and the prevalence of financial hardship varied by the measure used and population studied. Mean annual productivity loss ranged from $380 to $8236, 12% to 62% of survivors reported being in debt because of their treatment, 47% to 49% of survivors reported experiencing some form of financial distress, and 4% to 45% of survivors did not adhere to recommended prescription medication because of cost. Conclusions: Financial hardship is common among cancer survivors, although we found substantial heterogeneity in its prevalence. Our findings highlight the need for consistent use of definitions, terms, and measures to determine the best intervention targets and inform intervention development in order to prevent and minimize the impact of financial hardship experienced by cancer survivors.

Research on neighborhood effects on health in the United States: A systematic review of study characteristics.

Neighborhood effects on health research has grown over the past 20 years. While the substantive findings of this literature have been published in systematic reviews, meta-analyses, and commentaries, operational details of the research have been understudied. We identified 7140 multi-level neighborhoods and health papers published on US populations between 1995 and 2014, and present data on the study characteristics of the 256 papers that met our inclusion criteria. Our results reveal rapid growth in neighborhoods and health research in the mid-2000s, illustrate the dominance of observational cross-sectional study designs, and show a heavy reliance on single-level, census-based neighborhood definitions. Socioeconomic indicators were the most commonly analyzed neighborhood variables and body mass was the most commonly studied health outcome. Well-known challenges associated with neighborhood effects research were infrequently acknowledged. We discuss how these results move the agenda forward for neighborhoods and health research.

Retail Pharmacy Policy to End the Sale of Tobacco Products: What Is the Impact on Disparity in Neighborhood Density of Tobacco Outlets?

BACKGROUND: Population-level research on the implications of retail pharmacy policies to end the sale of tobacco products is scant, and the impact of such policies on racial/ethnic and socioeconomic disparities across neighborhoods in access to tobacco products remains unexplored. METHODS: We investigated the association between neighborhood sociodemographic characteristics and tobacco retail density in Rhode Island (RI; N = 240 census tracts). We also investigated whether the CVS Health (N = 60) policy to end the sale of tobacco products reduces the disparity in the density of tobacco retail across neighborhoods, and we conducted a prospective policy analysis to determine whether a similar policy change in all pharmacies in RI (N = 135) would reduce the disparity in tobacco retail density. RESULTS: The results revealed statistically significant associations between neighborhood sociodemographic characteristics and tobacco retail outlet density across RI neighborhoods. The results when excluding the CVS Health locations, as well as all pharmacies as tobacco retailers, revealed no change in the pattern for this association. CONCLUSIONS: The results of this study suggest that while a commendable tobacco control policy, the CVS Health policy appears to have no impact on the neighborhood racial/ethnic and socioeconomic disparities in the density of tobacco retailers in RI. Prospective policy analyses showed no impact on this disparity even if all other pharmacies in the state adopted a similar policy. IMPACT: Policy efforts aimed at reducing the disparity in access to tobacco products should focus on reducing the density of tobacco outlets in poor and racial/ethnic neighborhoods. Cancer Epidemiol Biomarkers Prev; 25(9); 1305-10. ©2016 AACR.

Racial Differences in the Surgical Care of Medicare Beneficiaries With Localized Prostate Cancer.

IMPORTANCE: There is extensive evidence suggesting that black men with localized prostate cancer (PCa) have worse cancer-specific mortality compared with their non-Hispanic white counterparts. OBJECTIVE: To evaluate racial disparities in the use, quality of care, and outcomes of radical prostatectomy (RP) in elderly men (≥ 65 years) with nonmetastatic PCa. DESIGN, SETTING, AND PARTICIPANTS: This retrospective analysis of outcomes stratified according to race (black vs non-Hispanic white) included 2020 elderly black patients (7.6%) and 24,462 elderly non-Hispanic white patients (92.4%) with localized PCa who underwent RP within the first year of PCa diagnosis in the Surveillance, Epidemiology, and End Results (SEER)-Medicare database between 1992 and 2009. The study was performed in 2014. MAIN OUTCOMES AND MEASURES: Process of care (ie, time to treatment, lymph node dissection), as well as outcome measures (ie, complications, emergency department visits, readmissions, PCa-specific and all-cause mortality, costs) were evaluated using Cox proportional hazards regression. Multivariable conditional logistic regression and quantile regression were used to study the association of racial disparities with process of care and outcome measures. RESULTS: The proportion of black patients with localized prostate cancer who underwent RP within 90 days was 59.4% vs 69.5% of non-Hispanic white patients (P < 001). In quantile regression of the top 50% of patients, blacks had a 7-day treatment delay compared with non-Hispanic whites. (P < 001). Black patients were less likely to undergo lymph node dissection (odds ratio [OR], 0.76 [95% CI, 0.66-0.80]; P < .001) but had higher odds of postoperative visits to the emergency department (within 30 days: OR, 1.48 [95% CI, 1.18-1.86]); after 30 days or more (OR, 1.45 [95% CI, 1.19-1.76]) and readmissions (within 30 days: OR, 1.28 [95% CI, 1.02-1.61]); ≥ 30 days (OR, 1.27 [95% CI, 1.07-1.51]) compared with non-Hispanic whites. The surgical treatment of black patients was associated with a higher incremental annual cost (the top 50% of blacks spent $1185.50 (95% CI , $804.85-1 $1566.10; P < .001) more than the top 50% of non-Hispanic whites). There was no difference in PCa-specific mortality (P = .16) or all-cause mortality (P = .64) between black and non-Hispanic white men. CONCLUSIONS AND RELEVANCE: Blacks treated with RP for localized PCa are more likely to experience adverse events and incur higher costs compared with non-Hispanic white men; however, this does not translate into a difference in PCa-specific or all-cause mortality.

Medicaid Coverage Expansion and Implications for Cancer Disparities.

OBJECTIVES: We estimated the impact on cancer disparities in US states that have chosen or not chosen to expand Medicaid since passage of the Patient Protection and Affordable Care Act. METHODS: Data came from the 2013 Uniform Data System for colorectal and cervical cancer screening rates among patients of federally qualified health centers (FQHCs); the 2012 Behavioral Risk Factor Surveillance System for colorectal, cervical, and breast cancer screening rates; and the US Cancer Statistics (2007-2011) for colorectal, cervical, and breast cancer mortality-to-incidence ratios (MIRs). Dyads of Medicaid expansion decisions with cancer screening rates and MIRs were mapped using ArcMap. RESULTS: States that had not expanded Medicaid as of September 2014 had lower cancer screening rates, especially among FQHC patients. Overall, cancer MIRs were not significantly different by Medicaid expansion status. However, Southeastern states without Medicaid expansion tended to have higher cancer MIRs and lower screening rates. CONCLUSIONS: Disparities in cancer screening that already disfavor states with high cancer rates may widen in states that have not chosen to expand Medicaid unless significant efforts are mounted to ensure their residents obtain preventive health care.

Financial hardship, unmet medical need, and health self-efficacy among African American men.

BACKGROUND: Health self-efficacy (the confidence to take care of one's health) is a key component in ensuring that individuals are active partners in their health and health care. The purpose of this study was to determine the association between financial hardship and health self-efficacy among African American men and to determine if unmet medical need due to cost potentially mediates this association. METHOD: Cross-sectional analysis was conducted using data from a convenience sample of African American men who attended a 1-day annual community health fair in Northeast Ohio (N = 279). Modified Poisson regression models were estimated to obtain the relative risk of reporting low health self-efficacy. After adjusting for sociodemographic characteristics, those reporting financial hardship were 2.91 times, RR = 2.91 (confidence interval [1.24, 6.83]; p < .05), more likely to report low health self-efficacy. When unmet medical need due to cost was added to the model, the association between financial hardship and low health self-efficacy was no longer statistically significant. CONCLUSION: Our results suggest that the association between financial hardship and health self-efficacy can be explained by unmet medical need due to cost. Possible intervention efforts among African American men with low financial resources should consider expanding clinical and community-based health assessments to capture financial hardship and unmet medical need due to cost as potential contributors to low health self-efficacy.

Financial hardship and the intensity of medical care received near death.

BACKGROUND: Although end-of-life (EOL) care can present a substantial financial burden for the household, the influence of this burden on the intensity of care received at the EOL remains unknown. The goal of this study was to determine the association between financial hardship and intensive care in the last week of life. METHODS: The Coping with Cancer (CwC) Study is a longitudinal, multisite cohort study of terminally ill cancer patients and their informal caregivers, September 2002-February 2008. Patients (N = 281) were followed from baseline to death, a median of 4.4 months after baseline assessment. Intensive care was defined as the use of resuscitation and/or ventilation in the patient's last week of life. Financial hardship was measured at study baseline as a positive response to whether the household had to use all or most of their savings because of the family member's illness. RESULTS: Twenty-nine percent reported financial hardship, and 9% received intensive EOL care. Patients reporting financial hardship had a 3.22 (95% CI: 1.38, 7.53) higher likelihood of receiving intensive EOL care compared with patients not reporting financial hardship. After adjusting for sociodemographic characteristics and patient preferences, patients reporting financial hardship had a 3.05 (95% CI: 1.22, 7.62) higher likelihood of receiving intensive EOL care. CONCLUSION: The depletion of a family's financial resources is a significant predictor of intensive EOL care, over and above the influence of sociodemographic characteristics and patient preferences.