Financial-legal navigation reduces financial toxicity of pediatric, adolescent, and young adult cancers.

BACKGROUND: Pediatric, adolescent, and young adult patients with cancer and their caregivers are at high risk of financial toxicity, and few evidence-based oncology financial and legal navigation programs exist to address it. We tested the feasibility, acceptability, and preliminary effectiveness of Financial and Insurance Navigation Assistance, a novel interdisciplinary financial and legal navigation intervention for pediatric, adolescent and young adult patients and their caregivers. METHODS: We used a single-arm feasibility and acceptability trial design in a pediatric hematology and oncology clinic and collected preintervention and postintervention surveys to assess changes in financial toxicity (3 domains: psychological response/Comprehensive Score for Financial Toxicity [COST], material conditions, and coping behaviors); health-related quality of life (Patient-Reported Outcomes Measurement Information System Physical and Mental Health, Anxiety, Depression, and Parent Proxy scales); and perceived feasibility, acceptability, and appropriateness. RESULTS: In total, 45 participants received financial navigation, 6 received legal navigation, and 10 received both. Among 15 adult patients, significant improvements in FACIT-COST (P = .041) and physical health (P = .036) were noted. Among 46 caregivers, significant improvements were noted for FACIT-COST (P < .001), the total financial toxicity score (P = .001), and the parent proxy global health score (P = .0037). We were able to secure roughly $335 323 in financial benefits for 48 participants. The intervention was rated highly for feasibility, acceptability, and appropriateness. CONCLUSIONS: Integrating financial and legal navigation through Financial and Insurance Navigation Assistance was feasible and acceptable and underscores the benefit of a multidisciplinary approach to addressing financial toxicity. CLINICALTRIALS.GOV REGISTRATION: NCT05876325.

Two Case Reports on Financial Toxicity and Healthcare Transitions in Adolescent and Young Adult Cancer Survivors.

A team conducted semistructured interviews and developed case reports about financial toxicity (FT) and healthcare transitions (HCTs) with two adolescent and young adult (AYA) cancer survivors. These reports found poor HCTs f.

A dyadic analysis of financial toxicity and health-related quality of life among bone marrow transplant patients and their caregivers.

OBJECTIVE: Relatively few dyad-based studies have evaluated the shared psychosocial and financial toxicity (FT) experiences of hematologic patients and their caregivers, especially those undergoing bone marrow transplantations (BMTs). This study evaluated the association of FT with health-related quality of life (QOL) among BMT patient-caregiver dyads. METHODS: Survey and electronic health record data were collected between April 2021 and January 2022 from BMT patients and their caregivers pre- (T1) and post-intervention (T2). Thirty-four patient-caregiver dyads completed surveys; all dyads included a patient experiencing elevated T1 FT. The effect of the total FT score (i.e., the combination of psychological response, coping behaviors, and material conditions domain scores) on physical health, mental health, anxiety, depression and distress scores was evaluated using Actor-Partner Interdependence Modeling (APIM). RESULTS: Patients and caregivers who reported lower total FT scores had better physical and mental health, and lower anxiety, depressive symptoms, distress (APIM actor effects). None of the partner effects were significant in the APIM models. Other model findings indicated that compared with caregivers, patients had lower reported physical health; mental health scores were higher, on average, for all participants at the T2 compared with T1; and members of dyads whose caregiver took time off work reported better physical health and lower depressive symptoms and distress than those whose caregiver did not. CONCLUSIONS: Our study addresses a significant gap in dyad-based cancer FT studies; the findings underscore the need for additional research to help develop tailored dyad-level FT interventions for improving health-related QOL among BMT patients.

Coverage and Cost-of-Care Links: Addressing Financial Toxicity Among Patients With Hematologic Cancer and Their Caregivers.

PURPOSE: This study examined the feasibility, acceptability, and preliminary effectiveness of an oncology financial navigation (OFN) intervention, Coverage and Cost-of-Care Links (CC Links), among patients with hematologic cancer and their caregivers who are at increased risk of experiencing financial toxicity (FT). METHODS: All patients who presented to the Division of Hematology and Bone and Marrow Transplant (BMT) at an National Cancer Institute-designated cancer center between April 2021 and January 2022 were screened for FT during inpatient and outpatient visits. Patients who screened positive for FT and met the inclusion criteria were recruited to participate in CC Links that provided financial navigation and assistance via a financial navigator. Caregivers of patients undergoing BMTs were also recruited to participate. Primary outcomes were defined as improvements in FT, distress, and physical and mental quality of life. RESULTS: Fifty-four patients and 32 caregivers completed the intervention and pre-/postintervention surveys. CC Links resulted in statistically significant decreases in the Comprehensive Score for FT for both patients (|t| = 2.42, P = .019) and caregivers (|t| = 2.43, P = .021) and total FT (|t| = 2.13, P = .041) and material conditions scores (|t| = 2.25, P = .031) for caregivers only. Only 27% of eligible patients participated in the study, whereas 100% of eligible caregivers participated. The majority of participants rated the intervention highly for acceptability (89%) and appropriateness (88%). An average of $2,500 (USD) in financial benefits was secured per participant via CC Links. CONCLUSION: CC Links was effective in decreasing FT among patients with hematologic cancer and their caregivers while demonstrating high acceptability and appropriateness ratings.

Financial navigation: Staff perspectives on patients' financial burden of cancer care.

PURPOSE: To describe perceptions of financial navigation staff concerning patients' cancer-related financial burden. METHODS: This qualitative descriptive study used a semi-structured interview guide to examine perceptions of financial navigation staff concerning patients' cancer-related financial burden. Staff who provided financial navigation support services to cancer patients were interviewed from different types of cancer programs across seven states representing rural, micropolitan, and urban settings. Interviews lasted approximately one hour, were audio recorded, and transcribed. Transcripts were double coded for thematic analysis. RESULTS: Thirty-five staff from 29 cancer centers were interviewed. The first theme involved communication issues related to patient and financial navigation staff expectations, timing and the sensitive nature of financial discussions. The second theme involved the multi-faceted impact of financial burden on patients, including stress, difficulty adhering to treatments, and challenges meeting basic, non-medical needs. CONCLUSIONS AND IMPLICATIONS FOR CANCER SURVIVORS: Cancer-related financial burden has a profound impact on cancer survivors' health and non-health outcomes. Discussions regarding cancer-related costs between cancer survivors and healthcare team members could help to normalize conversations and mitigate the multi-faceted determinants and effects of cancer-related financial burden. As treatment may span months and years and unexpected costs arise, having this discussion regularly and systematically is needed.

Enhancing Tobacco Treatment for Medicaid Recipients.

OBJECTIVE: Medicaid recipients are vulnerable to increased morbidity and mortality secondary to high tobacco use prevalence and barriers to accessing tobacco treatment. The purpose of the pilot study was to explore managed care administrators' perceptions of the facilitators and barriers to tobacco treatment for Medicaid recipients. METHODS: Focus groups with key informants (n = 14) from managed care organizations were conducted in fall 2018. Participants included case, integrated care, quality and field care managers, and individuals working in provider and network relations. RESULTS: Facilitators to tobacco treatment were universal quality reporting requirements, access to medications, and the role of case management in identifying and engaging tobacco users in treatment. Barriers included bias regarding smokers' ability to quit, communication challenges, and competing priorities. CONCLUSIONS: The analysis provided data to support the development of a policy brief and recommendations to the Department for Medicaid Services for enhancing tobacco dependence treatment.

Prevalence of Low Cost-Related Health Literacy Among Colorectal Cancer Survivors: Findings From the Kentucky Cancer Registry.

BACKGROUND: The lack of research on cost-related health literacy among colorectal cancer (CRC) survivors warrants further evaluation. OBJECTIVES: The objective of this study was to examine prevalence of low literacy (health, cancer, and insurance literacy), and numeracy and their association with sociodemographic factors in a group of Kentucky CRC survivors. METHODS: Based on data from the Kentucky Cancer Registry, this cross-sectional study evaluated survey results from January 2019 to November 2019 for the prevalence of low cost-related health literacy. FINDINGS: Overall, 104 participants had adequate health literacy (77%) and cancer health literacy (71%). However, fewer CRC survivors had high numeracy (16%) and confidence in choosing and using health insurance (18%). Thirty-one percent reported competence in their ability to select a health insurance plan and use it to access timely and appropriate healthcare services. Those with lower levels of education or those enrolled in a public health insurance plan were more likely to have lower health literacy, insurance literacy, and numeracy.

Interventions to address cancer-related financial toxicity: Recommendations from the field.

PURPOSE: Addressing financial toxicity among cancer patients is a complex process that requires a multifaceted approach, particularly for rural patients who may face additional cost-related barriers to care. In this study, we examined interventions being implemented by financial navigation staff at various cancer centers that help address financial toxicity experienced by oncology patients. METHODS: We conducted semistructured interviews with a convenience sample of financial navigation staff across 29 cancer centers in both rural and urban areas in 7 states. Interviews were audio-recorded and transcribed. Descriptive coding and thematic analysis techniques were used to analyze the data. FINDINGS: Thirty-five participants were interviewed, the majority of whom worked in cancer centers located in rural counties. Participants identified the use of screening tools, patient education, and access to tailored financial assistance resources as best practices. Immediate resource needs included additional financial navigation staff, including lay navigators and community health workers, to promote linkages to local resources. Suggested clinical areas for intervention included proactive and early implementation of financial assessments and discussions between providers and patients, along with training and access to regularly updated resources for those in financial navigator/counselor roles. Participants also discussed the need for policy-level interventions to reform health systems (including employment protections) and health insurance programs. CONCLUSIONS: Implementing proactive methods to screen for and address financial needs of patients is essential to improving cancer-related outcomes. Additional programs and research are needed to help establish systematic and standardized methods to enhance financial navigation services, especially for underserved rural communities.

How cancer programs identify and address the financial burdens of rural cancer patients.

PURPOSE: Financial toxicity is associated with negative patient outcomes, and rural populations are disproportionately affected by the high costs of cancer care compared to urban populations. Our objective was to (1) understand cancer programs' perceptions of rural-urban differences in cancer patients' experiences of financial hardship, (2) evaluate the resources available to cancer patients across the rural-urban continuum, and (3) determine how rural and urban health care teams assess and address financial distress in cancer patients. METHODS: Seven research teams within the Cancer Prevention and Research Control Network conducted semi-structured interviews with cancer program staff who have a role in connecting cancer patients with financial assistance services in both rural and urban counties. Interviews were audio-recorded and transcribed. We identified themes using descriptive content and thematic analysis. RESULTS: We interviewed 35 staffs across 29 cancer care programs in seven states, with roughly half of respondents from programs in rural counties. Participants identified differences in rural and urban patients' experiences of financial hardship related to distance required to travel for treatment, underinsurance, and low socioeconomic status. Insufficient staffing was an identified barrier to addressing rural and urban patients' financial concerns. CONCLUSIONS: Improved financial navigation services could mitigate the effects of financial toxicity experienced by cancer patients, particularly rural patients, throughout treatment and survivorship. Future research is needed to improve how cancer programs assess financial hardship in patients and to expand financial navigation services to better serve rural cancer patients.

Availability and Accessibility of Cancer Care Delivery Approaches to Reduce Financial Toxicity of Rural and Urban Cancer Patients in Kentucky.

Background: Cancer care delivery approaches to address financial toxicity among cancer patients are not well-established, especially in rural communities. Objectives: To identify healthcare staff perspectives of financial toxicity experienced by cancer patients and to examine staff- and systems-level cancer care delivery approaches for addressing financial toxicity, with a focus on rural cancer survivors in Kentucky. Methods: We conducted key informant interviews using a semistructured interview guide with cancer center staff who provided financial navigation and/or assistance to oncology patients and their caregivers at 15 cancer centers in Kentucky. Results: Findings from this study revealed several key factors related to the availability and accessibility of cancer care delivery approaches at patient, staff, and system levels for reducing financial toxicity and improving access to care for rural and urban cancer survivors. Participants perceived high financial toxicity among cancer patients, especially in rural regions, related to the high cost of cancer care, as well the patients' limited ability to engage in cost-of-care conversations, low cost-related health literacy, and challenges in navigating cancer care. The availability of trained financial navigators/counselors dedicated solely to assisting the cancer patient population was limited, as was the use of standardized and proactive screening methods for financial toxicity. While in-house and external financial assistance programs were frequently tapped into, there were limitations in the navigators' ability to provide cost estimates based on insurance coverage and in assisting patients with applying for health insurance. Gaps in cancer care delivery approaches to reduce financial toxicity of patients included enhanced transportation options, additional financial navigation staff, early assessment of patient financial barriers and concerns, increased cost transparency, and enhanced cost-of-care conversations between patients and clinicians. Conclusion: Establishing sustainable oncology-designated financial navigation roles is imperative to expanding patient support and improving health and financial outcomes of cancer patients. Future research is needed to gather evidence that informs programs targeted at mitigating financial toxicity of cancer patients in rural communities.

The association of health insurance literacy and numeracy with financial toxicity and hardships among colorectal cancer survivors.

PURPOSE: In this study, we examined the association of financial hardship measured by material financial burden and financial toxicity with health insurance literacy and numeracy among colorectal cancer survivors. The lack of evidence on the impact of cost-related health literacy, specifically health insurance literacy and numeracy, on financial toxicity among cancer survivors warrants further research. METHODS: Between January and November 2019, we used a cross-sectional research design to collect surveys from 104 colorectal cancer survivors (diagnosed within last 5 years) from the Kentucky Cancer Registry. Survey items assessed health insurance literacy (measured by confidence and behaviors in choosing and using health insurance), numeracy, material financial burden, and financial toxicity, in addition to socio-demographic variables. Survey data were subsequently linked to the participant's cancer registry record. Data were analyzed using descriptive, bivariate, and multiple linear regression analyses. RESULTS: The mean financial toxicity score was 24.5, with scores ranging from 3 to 43 (higher scores indicating greater financial toxicity). Eighty percent of participants indicated they had experienced one or more material burdens related to their cancer. The majority had adequate health insurance (79%); however, the majority also had low numeracy (84%). After controlling for socio-demographic covariates, significant predictors of greater financial toxicity were high material burden scores, low health insurance literacy, and low numeracy. CONCLUSIONS: Findings indicate the need to develop programs and interventions aimed at improving health insurance literacy and numeracy as a strategy for reducing financial toxicity and hardships among colorectal cancer survivors.

Current Practices for Screening and Addressing Financial Hardship within the NCI Community Oncology Research Program.

BACKGROUND: Cancer-related financial hardship is associated with poor care outcomes and reduced quality of life for patients and families. Scalable intervention development to address financial hardship requires knowledge of current screening practices and services within community cancer care. METHODS: The NCI Community Oncology Research Program (NCORP) 2017 Landscape Assessment survey assessed financial screening and financial navigation practices within U.S. community oncology practices. Logistic models evaluated associations between financial hardship screening and availability of a cancer-specific financial navigator and practice group characteristics (e.g., safety-net designation, critical access hospital, proportion of racial and ethnic minority patients served). RESULTS: Of 221 participating NCORP practice groups, 72% reported a financial screening process and 50% had a cancer-specific financial navigator. Practice groups with more than 10% of new patients with cancer enrolled in Medicaid (adjOR = 2.81, P = 0.02) and with less than 30% racial/ethnic minority cancer patient composition (adjOR = 3.91, P < 0.01) were more likely to screen for financial concerns. Practice groups with less than 30% racial/ethnic minority cancer patient composition (adjOR = 2.37, P < 0.01) were more likely to have a dedicated financial navigator or counselor for patients with cancer. CONCLUSIONS: Most NCORP practice groups screen for financial concerns and half have a cancer-specific financial navigator. Practices serving more racial or ethnic minority patients are less likely to screen and have a designated financial navigator. IMPACT: The effectiveness of financial screening and navigation for mitigating financial hardship could be tested within NCORP, along with specific interventions to address cancer care inequities.See related commentary by Yabroff et al., p. 593.

A Brief Educational Intervention Enhances Basic Cancer Literacy Among Kentucky Middle and High School Students.

Kentucky experiences the highest overall cancer incidence and mortality rates in the USA with the greatest burden in the eastern, Appalachian region of the state. Cancer disparities in Kentucky are driven in part by poor health behaviors, poverty, lack of health care access, low education levels, and low health literacy. Individuals with inadequate health literacy are less likely to participate in preventive measures such as obtaining screenings and making healthy lifestyle choices, thus increasing their chances of developing and dying from cancer. By increasing cancer literacy among youth and adults, it may be possible to decrease cancer disparities across Kentucky. This study aimed to establish connections with middle and high schools in Kentucky that would facilitate pilot implementation of a brief cancer education intervention and assessment of cancer health literacy among these student populations. A baseline pretest cancer literacy survey consisting of 10 items was given to 349 participants, followed by the delivery of a cancer education presentation. Immediately following the presentation, participants were given a posttest with identical items to the pretest. Participants were primarily Caucasian (89.4%), female (68.7%), and in 10th through 12th grade (80.5%). Significant (p < 0.0001) increases in both average and median percent of correctly marked items were observed between the pretest and posttest (average, pretest = 56% versus posttest = 85%; median, pretest = 60% versus posttest = 90%). The scores for all individual items increased after the brief intervention. The results demonstrated a significant increase in cancer literacy levels immediately after the pilot educational intervention. We suggest that it may be possible to improve cancer literacy rates in Kentucky by integrating cancer education into middle and high school science and/or health education curricula. This could ultimately drive changes in behaviors that may help lower cancer incidence and mortality rates. Plans for future interventional studies measuring long-term cancer knowledge retention and resultant behavioral changes among middle and high school students as well as the feasibility of integrating cancer education into middle and high school curricula are also discussed.

Access to Care as a Barrier to Mammography for Black Women.

Racial disparities in breast cancer screening, morbidity, and mortality persist for Black women. This study examines Black women's mammography beliefs and experiences with specific focus on barriers to mammography access in an urban city in the South East, United States. This retrospective, qualitative study used Penchansky and Thomas' conceptualization of health care access as the framework for the data analysis. In-depth, semistructured interviews were conducted with 39 Black women. Structural and personal factors continue to create barriers to mammography among Black women. Barriers to mammography were identified for each of the Penchansky and Thomas five dimensions of access to care: accessibility, affordability, availability, accommodation, and acceptability. Clinical practice strategies to increase mammography screening in Black women must be multifactorial, patient-centered, and culturally congruent. Policy development must address the structural barriers to mammography screening through expansion of health insurance coverage and increased accessibility to health care.

Effective Cost Conversations: Addressing Financial Toxicity and Cost-Related Health Literacy.

Cancer survivors have greater risk of experiencing financial toxicity, or the undue financial burden and stress that patients face related to the costs of cancer care. Cost-related health literacy promotion should begin at the point of care with effective cost-of-care conversations that help to identify and manage patient financial needs. Nurses are uniquely positioned and often sought out as trusted sources of cost-of-care information and play a key role in engaging in effective cost conversations that help consumers to understand and manage their costs of care.

Financial hardship among rural cancer survivors: An analysis of the Medical Expenditure Panel Survey.

Some cancer survivors report spending 20% of their annual income on medical care. Undue financial burden that patients face related to the cost of care is referred to as financial hardship, which may be more prevalent among rural cancer survivors. This study examined contrasts in financial hardship among 1419 rural and urban cancer survivors using the 2011 Medical Expenditure Panel Survey supplement - The Effects of Cancer and Its Treatment on Finances. We combined four questions, creating a measure of material financial hardship, and examined one question on financial worry. We conducted multivariable logistic regression analyses, which produced odds ratios (OR) for factors associated with financial hardship and worry, and then generated average adjusted predicted probabilities. We focused on rural and urban differences classified by metropolitan statistical area (MSA) designation, controlling for age, education, race, marital status, health insurance, family income, and time since last cancer treatment. More rural cancer survivors reported financial hardship than urban survivors (23.9% versus 17.1%). However, our adjusted models revealed no significant impact of survivors' MSA designation on financial hardship or worry. Average adjusted predicted probabilities of financial hardship were 18.6% for urban survivors (Confidence Interval [CI]: 11.9%-27.5%) and 24.2% for rural survivors (CI: 15.0%-36.2%). For financial worry, average adjusted predicted probabilities were 19.9% for urban survivors (CI: 12.0%-31.0%) and 18.8% for rural survivors (CI: 12.1%-28.0%). Improving patient-provider communication through decision aids and/or patient navigators may be helpful to reduce financial hardship and worry regardless of rural-urban status.

Challenges of using nationally representative, population-based surveys to assess rural cancer disparities.

Population-based surveys provide important information about cancer-related health behaviors across the cancer care continuum, from prevention to survivorship, to inform cancer control efforts. These surveys can illuminate cancer disparities among specific populations, including rural communities. However, due to small rural sample sizes, varying sampling methods, and/or other study design or analytical concerns, there are challenges in using population-based surveys for rural cancer control research and practice. Our objective is three-fold. First, we examined the characterization of "rural" in four, population-based surveys commonly referenced in the literature: 1) Health Information National Trends Survey (HINTS); 2) National Health Interview Survey (NHIS); 3) Behavioral Risk Factor Surveillance System (BRFSS); and 4) Medical Expenditures Panel Survey (MEPS). Second, we identified and described the challenges of using these surveys in rural cancer studies. Third, we proposed solutions to address these challenges. We found that these surveys varied in use of rural-urban classifications, sampling methodology, and available cancer-related variables. Further, we found that accessibility of these data to non-federal researchers has changed over time. Survey data have become restricted based on small numbers (i.e., BRFSS) and have made rural-urban measures only available for analysis at Research Data Centers (i.e., NHIS and MEPS). Additionally, studies that used these surveys reported varying proportions of rural participants with noted limitations in sufficient representation of rural minorities and/or cancer survivors. In order to mitigate these challenges, we propose two solutions: 1) make rural-urban measures more accessible to non-federal researchers and 2) implement sampling approaches to oversample rural populations.

Image of God, religion, spirituality, and life changes in breast cancer survivors: a qualitative approach.

Religion and spirituality are much studied coping mechanisms; however, their relationship to changes in behaviors, relationships, and goals is unclear. This study explored the impact of a breast cancer diagnosis on religion/faith and changes in behaviors, relationship, or goals. In this qualitative study, women, who participated in a larger, quantitative study, completed written responses to questions regarding the role of religion/faith in their lives, the impact of their diagnosis on their image of God and on faith/religious beliefs, and any changes in behaviors, relationships, or life goals were examined. Based on previous findings noting differences in psychological outcomes based on a higher (HE) or lesser (LE) engaged view of God, 28 (14 HE; 14 LE) women were included in the analysis. Awareness of life and its fleeting nature was common to all. Ensuing behaviors varied from a need to focus on self-improvement-egocentrism (LE)-to a need to focus on using their experiences to help others-altruism (HE). Study results suggest that seemingly small, but highly meaningful, differences based on one's worldview result in considerably different attitudinal and behavioral outcomes.