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.

Evaluation of the Impact of Discharge Clinic Follow-Up Interventions on 30-Day Readmission Rates.

Care transition programs can result in cost avoidance and decreased resource utilization. This project aimed to determine whether implementation of a discharge clinic, referral to a community paramedicine program, or a second postdischarge call affected 30-day readmission rates. This single-center retrospective exploratory design study included 727 discharged patients without access to a primary care provider who were scheduled for a discharge clinic transitions appointment. Readmission rates were 17.7% for those who completed a discharge appointment and 24.7% for those who did not; 4% for those completing a second postdischarge call and 26% for those who did not; and 11.1% for those referred to a community paramedicine program and 24.9% for those not referred. A completed discharge clinic appointment resulted in 36% lower odds of readmission. A completed discharge clinic appointment was effective in reducing 30-day readmission rates as was a follow-up call.

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.

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.

Addressing the Social Determinants of Health Equity.

A call to action for nurses.

Impact of Case Review Debriefings on Moral Distress of Extracorporeal Membrane Oxygenation Nurses.

BACKGROUND: Moral distress occurs when nurses know the ethically correct action to take but are restrained from taking it. Moral distress is prevalent in nurses who work in intense stress situations, as do extracorporeal membrane oxygenation nurses. LOCAL PROBLEM: Nurses who work in critical care settings have higher levels of moral distress than nurses who work in other practice areas. The purpose of this project was to evaluate the effectiveness of case review debriefings on moral distress of extracorporeal membrane oxygenation nurses. METHODS: Thirty-nine critical care registered nurses with specialty training in extracorporeal membrane oxygenation were invited to participate in this clinical improvement project. The intervention consisted of 2 case review debriefings. The Moral Distress Scale-Revised and the Moral Distress Thermometer were used to measure long-term and acute (short-term) moral distress. RESULTS: Of a potential range of 0 to 336, the mean Moral Distress Scale-Revised score was 134.0 before intervention and 131.8 after intervention. The frequency of experiencing moral distress did not change after intervention, but the level of moral distress increased after intervention. Moral Distress Thermometer scores decreased for 80% of participants and increased for 20%. Five items related to perceptions of prolonging death and suffering were the most frequent causes of moral distress. CONCLUSIONS: Developing strategies and providing opportunities to mitigate moral distress are crucial to a healthy future nursing workforce. Implications include the potential for improved patient care, decreased turnover rates and costs, and improved nurse satisfaction rates.

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.

Medical-Legal Partnerships Facilitate Patient-Provider Cost of Care Conversations: A Multisite Qualitative Study in the U.S.

This study examines the impact of medical-legal partnerships on facilitating and managing outcomes of patient-provider cost of care conversations. We conducted 96 semi-structured interviews with 18 patients and 78 medical-legal partnership personnel from 10 states between March and November of 2020. The presence of legal staff helped strengthen interdisciplinary collaborations and build confidence among providers around addressing health-harming legal needs through effective cost of care conversations. Medical-legal partnerships with well-established provider training opportunities reported effective cost of care conversations, improved patient outcomes, and increased return on investment for health systems. Lack of time, knowledge, and training were identified as barriers to clinicians engaging in cost of care conversations. Positive patient outcomes included improved access to public benefits, health benefits, financial benefits, special education services, stable housing, and food. Medical-legal partnerships facilitate effective patient-provider cost of care conversations that improve patients' medical, legal, and social service outcomes.

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.

Health Insurance Literacy Levels of Information Intermediaries: How Prepared Are They to Address the Growing Health Insurance Access Needs of Consumers?

BACKGROUND: With rising unemployment rates brought on by coronavirus disease 2019 pandemic, the rates of underinsured and uninsured consumers are likely to rise. Health information intermediaries play a critical role in assisting consumers with navigating the complexities of the United States health care system and the ever-changing health care policy landscape. Not much is known about the health insurance literacy (HIL) levels of information intermediaries and their ability to assist consumers with making informed decisions about their health insurance. OBJECTIVE: This study aimed to examine the association between information intermediary levels of HIL, sociodemographic factors, and confidence and behaviors in assisting consumers with health insurance needs. METHODS: We surveyed 118 information intermediaries from various roles to assess objective and subjective HIL, frequency, and confidence in assisting consumers, and confidence in understanding changes in federal health reform policies and state Medicaid waiver programs. KEY RESULTS: Less than one-half (39%) of information intermediaries had high subjective HIL and much fewer (13%) had high objective HIL. The average frequency of assisting consumers with health insurance scores were somewhat low, and confidence in assisting consumers with health insurance scores and confidence with understanding state and federal policies were modest. Results from our logistic regression model indicated that confidence in assisting consumers was found to be the only significant contributor to high subjective HIL. For every one-point increase on the confidence assisting subscale, there was a 35% increase in the information intermediaries having high subjective HIL. CONCLUSIONS: Findings from this study, coupled with rising uninsured rates, indicate the need for tailored training programs and resources to equip our information intermediaries to provide timely and appropriate health insurance support for consumers. [HLRP: Health Literacy Research and Practice. 2022;6(1):e30-e36.] Plain Language Summary: In a sample of 118 information intermediaries, representing community health workers, navigators, and other people in outreach roles, the majority had low subjective and objective HIL. We also found that as confidence with assisting consumers with health insurance needs increases, HIL increased as well. These findings indicate that tailored training programs and resources are needed to equip information intermediaries to provide health insurance support for consumers.

Definition and categorization of rural and assessment of realized access to care.

OBJECTIVE: To examine how three measures of realized access to care vary by definitions and categorizations of "rural". DATA SOURCES: Health Information National Trends Survey (HINTS) data, a nationally representative survey assessing knowledge of health-related information, were used. Participants were categorized by county-based Urban Influence Codes (UICs), Rural-Urban Continuum Codes (RUCCs), and census tract-based Rural-Urban Commuting Area (RUCAs). STUDY DESIGN: Three approaches were used across categories of UICs, RUCCs, and RUCAs: (1) non-metropolitan/metropolitan, (2) three-group categorization based upon population size, and (3) three-group categorization based on adjacency to metropolitan areas. Wald Chi-square tests evaluated differences in sociodemographic variables and three measures of realized access across three of Penchansky's "A's of access" and approaches. The three outcome measures included: having a regular provider (realized availability), self-reported "excellent" quality of care (realized acceptability), and self-report of the provider "always" spending enough time with you (provider attentiveness-realized accommodation). The average marginal effects corresponding to each outcome were calculated. DATA COLLECTION/EXTRACTION METHODS: N/A PRINCIPAL FINDINGS: All approaches indicated comparable variation in sociodemographics. In all approaches, RUCA-based categorizations showed differences in having a regular provider (e.g., 68.9% of non-metropolitan and 64.4% of metropolitan participants had a regular provider). This association was attenuated in multivariable analyses. No rural-urban differences in quality of care were seen in unadjusted or adjusted analyses regardless of approach. After adjustment for covariates, rural respondents reported greater provider attentiveness in some categorizations of rural compared with urban (e.g., non-metropolitan respondents reported 6.03 percentage point increase in probability of having an attentive provider [CI = 0.76-11.31%] compared with metropolitan). CONCLUSIONS: Our findings underscore the importance of considering multiple definitions of rural to understand access disparities and suggest that continued research is needed to examine the interplay between potential and realized access. These findings have implications for federal funding, resource allocation, and identifying health disparities.

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.

Assessing the Intention, Attitudes, and Social Influences on COVID-19 Preventive Behaviors Among Non-rural Black and Rural Appalachian White Populations: A Faith-Based Community Study.

Introduction: The COVID-19 pandemic has had detrimental impacts in non-rural Black and rural Appalachian populations. Yet despite the pandemic's magnitude, there is a scarcity of research exploring potential influences of attitudes and social influences within these populations on their adherence to COVID-19 public health preventive behaviors. Purpose: This study examines the intention, attitudes, and social influences to adhere to COVID-19 preventive behaviors among non-rural Black and rural Appalachian congregants in Kentucky by integrating the Theory of Planned Behavior (TPB). Methods: Secondary analysis of cross-sectional data was used to assess the association between the TPB constructs and four key public health behaviors: obeying a stay-at-home order, social distancing, good hygiene practices, and wearing a mask in public. Generalized estimating equation-type logistic regression models were fit for all binary outcomes. Results: A total of 942 respondents completed the survey. Eighty-nine per cent were older than 36 years, and 73% were female. Of the respondents who were White, 97.7% lived in rural Appalachia Kentucky, and of those who were Black, 93.5% lived in non-rural Kentucky. Attitude towards the behavior was negatively associated with the stay-at-home order ( p=0.003). Both attitude toward the behavior ( p<0.001) and the subjective norm ( p=0.025) were negatively associated with mask wearing. Perceived behavioral control was positively associated with mask wearing ( p=0.023) with non-rural respondents more likely to wear a mask than rural ones ( p<0.001). None of the TPB constructs showed significant association with hygiene practices or with social distancing. Implications: This study provides further insight into the cultural and societal influences that intersect during a global pandemic. The intention to comply with public health recommendations may vary at favorable and unfavorable levels. The results lend support to the importance of designing effective, culturally tailored communication for future public health preparedness.

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.

Methotrexate Intolerance: A Complex Belief System.

An estimated 11%-33% of persons taking methotrexate for rheumatoid arthritis (RA) are intolerant to this medication. Medications for RA are often discontinued or changed because of patient intolerance. Yet, intolerance is a poorly defined perspective, specifically the patient's perspective. This study used descriptive qualitative methodologies to describe methotrexate intolerance from the perspective of adult patients with RA. Semistructured, audio-recorded individual interviews were conducted with 14 adult English-speaking patients with RA who had been prescribed, were taking, or had ever taken methotrexate. Methotrexate intolerance involves a complex belief system involving 3 themes: beliefs about the risk of methotrexate, beliefs about the benefits of methotrexate, and beliefs about the threat of RA. Participants reported a threshold by which perceived risks and benefits of methotrexate were weighed against perceived risks of RA. The critical underpinnings of the largely undefined and unique patient perspective of methotrexate intolerance are described.

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.