BIPOC experiences of (anti-)racist patient engagement in adolescent and young adult oncology research: an electronic Delphi study.

Aims: To characterize Black, Indigenous and People of Color (BIPOC) adolescent and young adult (AYA) cancer patients' experiences of patient engagement in AYA oncology and derive best practices that are co-developed by BIPOC AYAs and oncology professionals. Materials & methods: Following a previous call to action from AYA oncology professionals, a panel of experts composed exclusively of BIPOC AYA cancer patients (n = 32) participated in an electronic Delphi study. Results: Emergent themes described BIPOC AYA cancer patients' direct experiences and consensus opinion on recommendations to advance antiracist patient engagement from BIPOC AYA cancer patients and oncology professionals. Conclusion: The findings reveal high-priority practices across all phases of research and are instructional for advancing health equity.

Depression, smoking, and lung cancer risk over 24 years among women.

BACKGROUND: Studies evaluating depression's role in lung cancer risk revealed contradictory findings, partly because of the small number of cases, short follow-up periods, and failure to account for key covariates including smoking exposure. We investigated the association of depressive symptoms with lung cancer risk in a large prospective cohort over 24 years while considering the role of smoking. METHODS: Women from the Nurses' Health Study completed measures of depressive symptoms, sociodemographics, and other factors including smoking in 1992 (N = 42 913). Depressive symptoms were also queried in 1996 and 2000, whereas regular antidepressant use and physician-diagnosed depression were collected starting in 1996. Multivariable Cox regression models estimated hazard ratios (HRs) and 95% confidence intervals (CIs) of lung cancer risk until 2016. RESULTS: We identified 1009 cases of lung cancer. Women with the highest v. lowest level of depressive symptoms had an increased lung cancer risk (HRsociodemographics-adjusted = 1.62, 95% CI 1.34-1.95; HRfully-adjusted = 1.25, 95% CI 1.04-1.51). In a test of mediation, lifetime pack-years of smoking accounted for 38% of the overall association between depressive symptoms and disease risk. When stratifying by smoking status, the elevated risk was evident among former smokers but not current or never smokers; however, the interaction term suggested no meaningful differences across groups (p = 0.29). Results were similar or stronger when considering time-updated depression status (using depressive symptoms, physician diagnosis, and regular antidepressant use) and chronicity of depressive symptoms. CONCLUSIONS: These findings suggest that greater depressive symptoms may contribute to lung cancer incidence, directly and indirectly via smoking habits, which accounted for over a third of the association.

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.

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.

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.

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.

Does Medicare Coverage Improve Cancer Detection and Mortality Outcomes?

Medicare is a large government health insurance program in the United States that covers about 60 million people. This paper analyzes the effects of Medicare insurance on health for a group of people in urgent need of medical care: people with cancer. We used a regression discontinuity design to assess impacts of near-universal Medicare insurance at age 65 on cancer detection and outcomes, using population-based cancer registries and vital statistics data. Our analysis focused on the three tumor sites for which screening is recommended both before and after age 65: breast, colorectal, and lung cancer. At age 65, cancer detection increased by 72 per 100,000 population among women and 33 per 100,000 population among men; cancer mortality also decreased by nine per 100,000 population for women but did not significantly change for men. In a placebo check, we found no comparable changes at age 65 in Canada. This study provides the first evidence to our knowledge that near-universal access to Medicare at age 65 is associated with improvements in population-level cancer mortality.

Recent relocation and decreased survival following a cancer diagnosis.

OBJECTIVE: To determine the impact of recent relocation prior to a cancer diagnosis on cancer-specific outcomes. METHODS: We identified 272,718 patients with two different entries in the Surveillance, Epidemiology, and End Results database within 3years of each other. Those who had relocated to a different county between entries were identified and we determined the risk of stage IV disease or cancer-specific mortality among relocators and non-relocators after adjusting for other patient-specific demographic and clinical factors. RESULTS: A total of 4639 (1.7%) patients relocated to a new county within 3years prior to a second cancer diagnosis and 268,079 (98.3%) patients did not. Patients who had relocated to a new area were more likely to be diagnosed with stage IV cancer (25.2% vs. 20.8%; adjusted odds ratio=1.27; 95% confidence interval [CI], 1.18-1.37; P<0.001), and had an increased risk of 10-year cancer-specific mortality (20.9% vs. 17.9%; adjusted hazard ratio 1.26; 95% CI, 1.17-1.36; P<0.001). CONCLUSION: These results suggest that recent relocation to a new county prior to a cancer diagnosis is associated with an increased risk of late-stage presentation and worse cancer-specific 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 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.

Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.

Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.

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.

Lifecourse socioeconomic circumstances and multimorbidity among older adults.

BACKGROUND: Many older adults manage multiple chronic conditions (i.e. multimorbidity); and many of these chronic conditions share common risk factors such as low socioeconomic status (SES) in adulthood and low SES across the lifecourse. To better capture socioeconomic condition in childhood, recent research in lifecourse epidemiology has broadened the notion of SES to include the experience of specific hardships. In this study we investigate the association among childhood financial hardship, lifetime earnings, and multimorbidity. METHODS: Cross-sectional analysis of 7,305 participants age 50 and older from the 2004 Health and Retirement Study (HRS) who also gave permission for their HRS records to be linked to their Social Security Records in the United States. Zero-inflated Poisson regression models were used to simultaneously model the likelihood of the absence of morbidity and the expected number of chronic conditions. RESULTS: Childhood financial hardship and lifetime earnings were not associated with the absence of morbidity. However, childhood financial hardship was associated with an 8% higher number of chronic conditions; and, an increase in lifetime earnings, operationalized as average annual earnings during young and middle adulthood, was associated with a 5% lower number of chronic conditions reported. We also found a significant interaction between childhood financial hardship and lifetime earnings on multimorbidity. CONCLUSIONS: This study shows that childhood financial hardship and lifetime earnings are associated with multimorbidity, but not associated with the absence of morbidity. Lifetime earnings modified the association between childhood financial hardship and multimorbidity suggesting that this association is differentially influential depending on earnings across young and middle adulthood. Further research is needed to elucidate lifecourse socioeconomic pathways associated with the absence of morbidity and the presence of multimorbidity among older adults.

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.

The Prospective Association of Social Integration With Life Span and Exceptional Longevity in Women.

OBJECTIVES: Although stronger social relationships have been associated with reduced mortality risk in prior research, their associations with favorable health outcomes are understudied. We evaluated whether higher social integration levels were associated with longer life span and greater likelihood of achieving exceptional longevity. METHOD: Women from the Nurses' Health Study completed the Berkman-Syme Social Network Index in 1992 (N = 72,322; average age = 58.80 years), and were followed through 2014 with biennial questionnaires. Deaths were ascertained from participants' families, postal authorities, and death registries. Accelerated failure time models adjusting for relevant covariates estimated percent changes in life span associated with social integration levels; logistic regressions evaluated likelihood of surviving to age 85 years or older among women who could reach that age during follow-up (N = 16,818). RESULTS: After controlling for baseline demographics and chronic diseases, socially integrated versus isolated women had 10% (95% confidence interval [CI] = 8.80-11.42) longer life span and 41% (95% CI = 1.28-1.54) higher odds of surviving to age 85 years. All findings remained statistically significant after further adjusting for health behaviors and depression. DISCUSSION: Better social integration is related to longer life span and greater likelihood of achieving exceptional longevity among midlife women. Findings suggest social integration may be an important psychosocial asset to evaluate for promoting longer, healthier lives.

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.

Food Hardship and Obesity in a Sample of Low-Income Immigrants.

Very little work has examined the relationship between food hardship (having inconsistent financial resources to buy food) and obesity among immigrant groups. A cross-sectional study was conducted in a low-income, multi-racial/ethnic adult sample in greater Boston, MA (n = 828). Modified Poisson regression models estimated the association between food hardship obesity (BMI ≥ 30) among adults reporting food hardship; interactions were tested by place of birth. Body mass index (BMI) was based on anthropometric height and weight. In adjusted models, those experiencing food hardship were more likely to be obese (RR 1.17, CI 1.07, 1.29) than those not experiencing food hardship. Participants from Haiti reporting food hardship were more likely to be obese than those not reporting hardship (RR 1.58, CI 1.23, 2.04); this was not the case among other groups (US born, Puerto Rican, Latin American, Other). The relationship between food hardship and weight may vary among immigrant subgroups.