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.

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.

"I Lay Awake at Night": Latino Family Caregivers' Experiences Covering Out-of-Pocket Costs When Caring for Someone Living With Dementia.

BACKGROUND AND OBJECTIVES: The financial burden of caregiving has received less research attention than physical and emotional costs. This is especially true for underserved ethnic minorities. Financial strain affects mental and physical health and is unequally distributed across caregivers of different races and ethnicities. Although caregivers overall spend, on average, one quarter of their income on caregiving, Latino caregivers, the focus of this study, spend nearly half. RESEARCH DESIGN AND METHODS: To better understand this disparity, we conducted 11 qualitative interviews with 14 Latino caregivers of persons living with dementia located in either California or Texas. Interview transcripts were thematically coded, guided by a material-psychosocial-behavioral conceptual model of financial strain. RESULTS: We identified 3 themes: daily needs and costs, psychological distress caused by financial issues, and stressful barriers to accessing family and societal support. Furthermore, interviews revealed how Latino culture may influence spending patterns and management of costs. Findings suggest that preference by Latino families to care for a family member in the home may be met with a financial disadvantage due to the high out-of-pocket costs of care. DISCUSSION AND IMPLICATIONS: A better understanding of the factors contributing to high costs for Latino caregivers and how these costs affect caregivers will inform approaches at both the individual and policy levels and develop culturally relevant interventions to help Latino families to lower caregiving costs. This is especially important as the number of Latinos living with dementia is expected to increase over the next 4 decades and effective interventions are lacking.

The association between material-psychological-behavioral framework of financial hardship and markers of inflammation: a cross-sectional study of the Midlife in the United States (MIDUS) Refresher cohort.

BACKGROUND: Measures of financial hardship have been suggested to supplement traditional indicators of socioeconomic status (SES) to elucidate household economic well-being. This study formally tested the construct validity of financial hardship and examined its association with markers of inflammation. METHODS: This study utilized data from the Midlife Development in the United States Refresher Study (MIDUS-R; Age = 23-76, 53.7% female, 71% white). Participants were divided into exploratory factor analysis (EFA; completed SAQs only; N = 2,243) and confirmatory factor analysis sample (CFA; completed SAQs and biomarker assessment; N = 863). Analysis was divided into three steps. First, exploratory factor analysis (EFA) is used to examine if the three-domain factor (material, psychological, and behavioral) is the best fitting model for financial hardship measures. Second, we conducted CFA to test the hypothesized three-factor measurement model of financial hardship. Third, we tested the association between domains and the general latent factor of financial hardship and inflammation (interleukin 6/IL6, c-reactive protein/CRP, and fibrinogen). RESULTS: Results from EFA supported the three-domain model of financial hardship. The hypothesized three-domain measurement model fits well in a different sample within MIDUS-R. In the models adjusted for age and sex, higher material hardship was associated with elevated IL6, CRP, and fibrinogen, while higher behavioral hardship was associated with higher CRP. The association between the material domain and IL6 remained significant after adding body mass index, education, and race as additional covariates. The second-order financial hardship measurement model was associated with IL6, CRP, and fibrinogen, adjusted for age, sex, BMI, education, and race. CONCLUSION: Explicating the socioeconomic environment to include indicators of financial hardship can help researchers better understand the pathway between SES and the inflammation process, which may help elucidate pathways between SES and age-related chronic diseases associated with inflammation.

Anticipatory Guidance: Developing a Patient Navigation Pathway to Reduce the Financial Toxicity of Cancer.

Background: Healthcare providers have an influential role in the experience of financial toxicity among their cancer patients, yet patients commonly report unmet needs and dissatisfaction regarding communication with their providers about financial concerns. Aims: The purpose of this study is to develop a novel financial navigation pathway that leverages existing patient financial services and resources with corresponding patient-centered, community-informed strategies, via study participants, that may be utilized in routine care to reduce financial hardship among cancer patients. Methods: We conducted in-depth interviews (n=50) with 34 cancer patients and 16 cancer care professionals at a National Cancer Institute designated comprehensive cancer center located in a dense urban area of the US between December2022 to June 2023. Results: Content analyses resulted in emergent themes and representative quotations on experiences of financial hardship within the material, behavioral, and psychosocial domains. Investigators used emergent themes to develop financial strategies and construct a financial navigation pathway to screen patients for and intervene upon the financial toxicity of cancer in routine care. Conclusion: This study followed an innovative approach by constructing a financial navigation pathway tool that follows the oncological workflow at a National Cancer Institute designated comprehensive cancer center. Future research is needed to test the tool's impact on financial toxicity, cancer outcomes, and other health-related outcomes, and to better understand how much patient navigation is needed to bring about meaningful change.

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.

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.

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.

A Mixed Methods Evaluation of Interventions to Meet the Requirements of California Senate Bill 1152 in the Emergency Departments of a Public Hospital System.

Policy Points Clarifications to Senate Bill (SB) 1152 are necessary to address the differences between inpatient and emergency department (ED) discharge processes, determine how frequently an ED must deliver the SB 1152 bundle of services to a single patient, and establish expectations for compliance during off-hours when social services are unavailable. Because homelessness cannot be resolved in a single ED visit, the state should provide funding to support housing-focused case workers that will follow patients experiencing homelessness (PEH) through the transition from temporary shelters to permanent supportive housing. Medi-Cal could fund the delivery of the SB 1152 bundle of services to defray the costs to public hospitals that provide care for high numbers of PEH. California legislators should consider complementary legislation to increase funding for shelters so that sufficient capacity is available to accept PEH from EDs and hospitals, and to fund alternative strategies to prevent poverty and the upstream root causes of homelessness itself. CONTEXT: Prompted by stories of "patient dumping," California enacted Senate Bill (SB) 1152, which mandates that hospitals offer patients experiencing homelessness (PEH) a set of resources at discharge to ensure safety and prevent dumping. METHODS: To evaluate interventions to meet the requirements of SB 1152 across three emergency departments (EDs) of a Los Angeles County public hospital system with a combined annual census of 260,000 visits, we used an explanatory sequential mixed methods approach, focusing first on quantitative evaluation and then using information from qualitative interviews to explain the quantitative findings. FINDINGS: In total, 2.9% (1,515/52,607) of encounters involved PEH. Documentation of compliance with the eight required components of SB 1152 was low, ranging from 9.0% to 33.9%. Twenty-five provider interviews confirmed support for providing assistance to PEH in the ED, but the participants described barriers to compliance, including challenges in implementing universal screening for homelessness, incongruity of the requirements with the ED setting, the complexity of the patients, and the limitations of SB 1152 as a health policy. CONCLUSIONS: Despite operationalizing universal screening for homelessness, we found poor compliance with SB 1152 and identified multiple barriers to implementation.

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.

Capturing the financial hardship of cancer in military adolescent and young adult patients: A conceptual framework.

OBJECTIVE: Examine whether an existing conceptual framework for understanding financial hardship following a cancer diagnosis captures experiences among military adolescent and young adult (AYA) patients. METHODOLOGICAL APPROACH: Investigators conducted focus groups and key informant interviews (n = 24) with active-duty military AYA cancer patients, their spouses, cancer care providers, and commanders at a military medical center and military post. FINDINGS: Content analysis and thematic abstraction revealed that military AYA cancer patients' experiences of financial hardship occur within material, psychosocial, and behavioral domains that are situated within the contextual influences of AYA development and military culture. Subsequently, investigators constructed an expanded conceptual framework for understanding the financial hardship of cancer to capture these contexts. CONCLUSION: Differentiating experiences of financial hardship into material, psychosocial, and behavioral domains situated within life course development and occupational culture contexts, may inform development of interventions with aspects of financial hardship most impacted by cancer care.

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.

A call to action: Antiracist patient engagement in adolescent and young adult oncology research and advocacy.

Amidst the concurrent global crises of coronavirus disease 2019 (COVID-19), uprisings against Anti-Black racism and police brutality, as well as anti-Asian racism and violence, the field of medicine found itself simultaneously called upon to respond as essential workers in the public health devastation of COVID-19, and as representatives of healthcare institutions wrought with the impacts of systemic racism. Clinicians, researchers, and advocates in adolescent and young adult (AYA) oncology, must come together in authentic activism to begin the work of creating structural change to advance antiracist approaches to patient engagement in AYA oncology research and advocacy. Critical review of existing practices is needed to ensure that ethical and effective research methods are employed when engaging with racial and ethnic minority AYA patients with cancer, who may be particularly vulnerable and exploited in the current context.

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.