"They don't care to study it": Trust, race, and health care experiences among patient-caregiver dyads with multiple myeloma.

BACKGROUND: Medical mistrust, rooted in unethical research, is a barrier to cancer-related health care for Black/African American (AA) persons. Understanding trust, mistrust, and health care experiences is crucial, especially in multiple myeloma (MM), which disproportionately burdens Black/AA persons in incidence and survival. STUDY PURPOSE: This study qualitatively examines the experiences of Black/AA and White dyads (patient with MM and adult caregiver) to gain insights into these phenomena. METHODS: From November 2021 to April 2022, we recruited 21 dyads from the UNC Lineberger Comprehensive Cancer Center. Participants completed a sociodemographic survey and a 60-90 min semi-structured interview. We used ATLAS.ti v9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk Inc). RESULTS: We interviewed 21 racially concordant dyads (11 Black/AA, 10 White) with mean patient ages of 70 (Black/AA) and 72 (White) at enrollment. Both Black/AA and White caregivers had a mean enrollment age of 68. The mean duration from MM diagnosis to enrollment for all patients was 5.5 years. Four key themes emerged: (1) knowledge and trust, (2) heightened emotions and discomfort, (3) differing mental constructs of health care experiences, and (4) mitigating mistrust, which varied by self-identified race. Black/AA participants had greater knowledge of historical events like the U.S. Public Health Service Untreated Syphilis Study at Tuskegee and carried the emotional burden longer. They also emphasized self-learning and self-guided research about MM for informed medical decision-making. Both Black/AA and White dyads emphasized the pivotal role of patient-provider relationships and effective communication in fostering trust and addressing concerns. CONCLUSION: Our study offers contextual insights into the enduring challenges of medical mistrust, particularly within the Black/AA community, and its implications for patients and caregivers accessing and receiving MM-related care. Future studies should leverage these insights to guide the development of multilevel interventions addressing medical mistrust within the Black/AA community.

North Carolina Caregiver Listening Study: Caregiver Experiences and Perspectives on Services and Supports in an Aging U.S. State.

Family caregivers experience health, financial, and social burdens related to caregiving responsibilities. North Carolina has an estimated 1.3 million caregivers, equating to a value of $13.1 billion per year. Caregiving demands warrant additional understanding of the caregiver lived experiences. Our objective was to document these North Carolina caregiver experiences during the era of COVID-19 through focus groups. Participants were recruited through diverse community organizations. All 44 caregivers who completed interest solicitation surveys were invited to participate; 29 caregivers participated across 11 groups. Thematic analysis was used to code and synthesize transcripts from each participant using Dedoose software and guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). Caregiver routines (caregiving as an all-encompassing role; dimensions of support); most challenging parts (exhaustion and defeat; lacking support; evolving relationships); most rewarding parts (care recipient resilience; quality time; sense of purpose); social service and healthcare system interactions (positive interactions; negative interactions; inaccessible services); COVID-19 impacts on caregiving (opportunities; challenges); and caregiver suggestions for system improvements (increasing financial support; improved coordination; ideological shifts). Caregivers shared unmet needs, challenges, and opportunities for improvement. Examining these needs and experience-informed recommendations can help advance additional caregiving research, policy-making, and program development.

Understanding Young Adult Cancer Survivors' Engagement with Cancer Storylines in Entertainment Media Narratives.

Purpose: Some young adult cancer survivors (YACS; ages 18-39) struggle to incorporate their cancer experiences into their identities. Using stories, or narratives, is a new approach that could help YACS to integrate cancer and their identity. These stories offer opportunities to experience perspectives outside of oneself, which can build validation and self-compassion. However, little is known about whether stories about cancer (i.e., the threat itself) are beneficial. Method: YACS completed an online survey about their engagement with cancer storylines in entertainment media narratives (e.g., books, movies, and television shows). They also described their reactions to encountering these storylines in entertainment media. Results: Participants (n = 108) were primarily White. Participants who sought cancer storylines reported a more positive impact of cancer on their sense of purpose and identity. Among YACS who had completed treatment, cancer storylines were sought after treatment more than during treatment. In addition, compared with their peers, participants who identified as Black reported greater cancer storyline seeking both during and after treatment. Nearly half of participants (n = 45, 47.4%) described reactions to cancer-related storylines as positive or mixed, primarily owing to feelings of inspiration or validation. Conclusion: Consuming cancer storylines can offer some benefits for YACS, especially among those finished with treatment and those who identify as Black. However, not all YACS responded positively, so future research should investigate which YACS could benefit most from cancer-related storylines. Nonetheless, entertainment media narratives represent a novel approach to supporting YACS' integration of cancer into their identity.

Reel reflections: the role of entertainment media narratives in coping among young adult cancer survivors.

INTRODUCTION: Young adult cancer survivors (YACS; ages 18-39) report a significant psychological burden. Entertainment media narratives (e.g., books, movies, shows that are produced for mass consumption) might be an effective tool for reducing this distress, although little is known about present use among YACS. METHOD: YACS completed a survey about their use of entertainment media narratives to cope with cancer using an adapted version of the Brief COPE. Additionally, YACS reported their use of entertainment media narratives to start conversations about their experience with others, and they described features of entertainment media narratives that they found helpful in coping. RESULTS: We recruited 108 YACS from three recruitment sites. Most participants were White (n = 65), female (n = 54), and recruited from Prolific (n = 56), an Internet-based, crowdsourced data collection platform. Participants were, on average, 30 years old and 45 months from the completion of their primary cancer treatment. YACS who used entertainment media to cope with cancer (n = 32; 29.6%) were significantly younger and significantly closer to the end of their primary treatment. Compared to nonusers, users of entertainment media narratives to cope were also more likely to identify as Black; identifying as Black was associated with a 2.05-factor increase in using narrative entertainment media to cope with cancer even when controlling for other demographic differences. Additionally, compared to their peers, Black YACS reported greater use of narratives to start cancer-related conversations. Emotional and inspirational storylines were the most helpful story features. DISCUSSION: Some YACS, especially Black YACS, use stories to cope with their cancer experience. YACS patients could find stories useful in exploring their cancer-related emotions, although the exact benefits are still unknown.

An Environmental Scan and Qualitative Inquiry of Cancer Patient Navigation Services in North Carolina.

Background and Objectives: Patient navigation services reduce barriers to accessing cancer care and lead to improved outcomes for patients. North Carolina (NC) has thousands of cancer patients seeking cancer care services each year. We sought to complete a digital environmental scan and qualitative inquiry of cancer patient navigation services throughout the state to better inform patients, hospitals administrators, and state officials about the current state of patient navigation programs for cancer patients throughout NC. Methods: For seven cancer hospitals in NC, two steps were used: an environmental scan of publicly available information on the hospitals' websites about navigation services, and key informant interviews with navigation staff at each site. Results: The website scans revealed information about navigation services was incomplete. Each hospital had a page dedicated to cancer navigation, but many did not outline the specific services available to patients. Interviews revealed that navigation services are available to cancer patients across diagnoses, although only a subset of patients receive services. Cancer navigators reported that their work includes care coordination, patient advocacy, emotional support, and addressing non-medical barriers to health care access (transportation, finances, childcare, etc.). Each navigation service had a unique configuration and referral pattern. Conclusions: Cancer hospitals throughout NC are working to address barriers to care commonly faced by patients, with some programs offering more robust services compared to others. Hospitals would benefit from updating their websites at regular intervals to fully report the services available to patients through their programs, including direct and clear patient navigation contact methods.

LGBTQ+ inequity in crowdfunding cancer costs: The influence of online reach and LGBTQ+ state policy.

BACKGROUND: Emerging literature suggests that LGBTQ+ cancer survivors are more likely to experience financial burden than non-LGBTQ+ survivors. However, LGBTQ+ cancer survivors experience with cost-coping behaviors such as crowdfunding is understudied. METHODS: We aimed to assess LGBTQ+ inequity in cancer crowdfunding by combining community-engaged and technology-based methods. Crowdfunding campaigns were web-scraped from GoFundMe and classified as cancer-related and LGBTQ+ or non-LGBTQ+ using term dictionaries. Bivariate analyses and generalized linear models were used to assess differential effects in total goal amount raised by LGBTQ+ status. Stratified models were run by online reach and LGBTQ+ inclusivity of state policy. RESULTS: A total of N = 188,342 active cancer-related crowdfunding campaigns were web-scraped from GoFundMe in November 2022, of which N = 535 were LGBTQ+ and ranged from 2014 to 2022. In multivariable models of recent campaigns (2019-2022), LGBTQ+ campaigns raised $1608 (95% CI: -2139, -1077) less than non-LGBTQ+ campaigns. LGBTQ+ campaigns with low (26-45 donors), moderate (46-87 donors), and high (88-240 donors) online reach raised on average $1152 (95% CI: -$1589, -$716), $1050 (95% CI: -$1737, -$364), and $2655 (95% CI: -$4312, -$998) less than non-LGBTQ+ campaigns respectively. When stratified by LGBTQ+ inclusivity of state level policy states with anti-LGBTQ+ policy/lacking equitable policy raised on average $1910 (95% CI: -2640, -1182) less than non-LGBTQ+ campaigns from the same states. CONCLUSIONS AND RELEVANCE: Our findings revealed LGBTQ+ inequity in cancer-related crowdfunding, suggesting that LGBTQ+ cancer survivors may be less able to address financial burden via crowdfunding in comparison to non-LGBTQ+ cancer survivors-potentially widening existing economic inequities.

Associations Among Family Caregivers' Perceptions of Loneliness, Choice, and Purpose: a Comparative Analysis Between Non-Hispanic Black Caregivers and Non-Hispanic White Caregivers in a Population-Based Sample.

BACKGROUND: Loneliness is a frequent experience among family members engaging in caregiving responsibilities and may vary across racial and ethnic groups. This study aimed to examine (a) the difference in loneliness between non-Hispanic Black and non-Hispanic White caregivers, (b) the associations between loneliness and perceptions of choice and purpose in caregiving, and (c) whether those associations with loneliness differ by caregivers' race. METHOD: Descriptive statistics and ordinal logistic regression were conducted in a population-based sample of 1000 caregivers (Black caregivers, n = 199; White caregivers, n = 801) from the 2020 Caregiving in the U.S. STUDY: The survey design was properly addressed. Key variables included loneliness (level of feeling alone about being a caregiver), choice (whether or not reporting a choice in taking on the caregiver responsibility), sense of purpose (level of purpose/meaning in life from caregiving), and race (Black/White). Models adjusted for caregiving characteristics (e.g., hour of caregiving) and sociodemographic characteristics (e.g., age and education). RESULTS: Black caregivers had lower odds of reporting a higher level vs. a lower level of loneliness than White caregivers (aOR = 0.67, 95%CI = 0.47, 0.96). Reporting having no choice was associated with higher odds of a higher level of loneliness (aOR, 0.77, 95%CI = 0.67, 0.88). Higher sense of purpose scores were associated with lower odds of a higher level of loneliness (aOR = 0.81, 95%CI = 0.71, 0.93). No significant moderation effects of race were found. CONCLUSION: Black caregivers reported lower loneliness scores than White caregivers. Reporting no choice and lower sense of purpose were associated with higher loneliness in both racial groups.

Caring for Children in Relation to Financial Hardship, Advance Care Planning, and Genetic Testing Among Adolescent and Young Adults with Cancer.

Purpose: When a cancer diagnosis coincides with caring for children, it may influence the financial impacts of cancer and decisions to pursue advance care planning (ACP) or genetic testing. We examined associations between caring for children and financial hardship, ACP, and genetic testing among female adolescent and young adult (AYA) cancer survivors in North Carolina and California. Methods: Participants were diagnosed at ages 15-39 years with breast, melanoma, gynecologic, lymphoma, or thyroid cancer during 2004-2016. We estimated adjusted prevalence differences (aPDs) and ratios (aPRs) for each outcome by child caring status using marginal structural binomial regression models. Results: Among 1595 women ages 19-54 years at survey (median = 7 years since diagnosis), 819 (51.3%) reported that they were caring for children at diagnosis. Women caring for children had a higher prevalence of material financial hardship (e.g., medical debt; 30% vs. 21.9%; aPD = 9%, 95% confidence interval [CI]: 3 to 14; aPR = 1.39, 95% CI: 1.12 to 1.72) but similar levels of psychological financial hardship compared to noncaregivers. Women caring for children were more likely to complete ACPs (42.2% vs. 30.7%; aPD = 9%, 95% CI: 3 to 16; aPR = 1.30, 95% CI: 1.08 to 1.57). Among the 723 survivors of breast, endometrial, and ovarian cancer, the prevalence of genetic testing was higher among women caring for children (89%) than noncaregivers (81%); this difference was not statistically significant. Conclusion: Women caring for children at diagnosis may be at elevated risk for adverse financial outcomes and may benefit from additional financial navigation support. Childcare responsibilities may further complicate health decision-making for AYAs diagnosed with cancer.

Processes for identifying caregivers and screening for caregiver and patient distress in community oncology: results from WF-1803CD.

BACKGROUND: Despite their vital roles, informal caregivers of adult cancer patients are commonly overlooked in cancer care. This study describes processes for identifying cancer caregivers and processes for distress screening and management among caregivers and patients in the understudied community oncology setting. METHODS: Supportive care leaders from the National Cancer Institute Community Oncology Research Program practices completed online survey questions regarding caregiver identification, caregiver and patient distress screening, and distress management strategies. We described practice group characteristics and prevalence of study outcomes. Multivariable logistic regression explored associations between practice group characteristics and caregiver identification in the electronic health record (EHR). RESULTS: Most (64.9%, 72 of 111) supportive care leaders reported routine identification and documentation of informal caregivers; 63.8% record this information in the EHR. Only 16% routinely screen caregivers for distress, though 92.5% screen patients. Distress management strategies for caregivers and patients are widely available, yet only 12.6% are routinely identified and screened and had at least 1 referral strategy for caregivers with distress; 90.6% are routinely screened and had at least 1 referral strategy for patients. Practices with a free-standing outpatient clinic (odds ratio [OR] = 0.29, P = .0106) and academic affiliation (OR = 0.01, P = .04) were less likely to identify and document caregivers in the EHR. However, higher oncologist volume was associated with an increased likelihood of recording caregiver information in the EHR (OR = 1.04, P = .02). CONCLUSIONS: Despite high levels of patient distress screening and management, few practices provide comprehensive caregiver engagement practices. Existing patient engagement protocols may provide a promising platform to build capacity to better address caregiver needs.

Economic Evaluation of a Nonmedical Financial Assistance Program on Missed Treatment Appointments Among Adults With Cancer.

PURPOSE: We retrospectively evaluated the clinical and economic impact of a program providing nonmedical financial assistance on missed treatment appointments among patients receiving cancer treatment at a large, Southeastern public hospital system. MATERIALS AND METHODS: We used patient electronic health records, program records, and cancer registry data to examine the impact of the program on rates of missed (or no-show) radiation therapy and infusion chemotherapy/immunotherapy appointments in the 180 days after treatment initiation. We used propensity weighting to estimate the effect of the program, stratified by treatment appointment type (radiation therapy, infusion chemotherapy/immunotherapy). We developed a decision tree-based economic model to conduct a cost-consequence analysis from the health system perspective in a hypothetical cohort over a 6-month time horizon. RESULTS: Of 1,347 patients receiving radiation therapy between 2015 and 2019, 53% (n = 715) had ≥1 no-shows and 28% (n = 378) received program assistance. Receipt of any assistance was associated with a 2.1 percentage point (95% CI, 0.6 to 3.5) decrease in the proportion of no-shows, corresponding to a 51% decrease in the overall mean no-show proportion. Under the current funding model, the program is estimated to save the health system $153 in US dollars per missed appointment averted, relative to not providing nonmedical financial assistance. Of the 1,641 patients receiving infusion chemotherapy/immunotherapy, 33% (n = 541) received program assistance, and only 14% (n = 223) had ≥1 no-shows. The financial assistance program did not have a significant effect on no-show proportions among infusion visits. CONCLUSION: This study used a novel approach to retrospectively evaluate a nonmedical financial assistance program for patients undergoing active cancer treatment. Findings support investment in programs that address patients' nonmedical financial needs, particularly for those undergoing intensive radiation therapy.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Family Caregivers.

Family and friend caregivers play critical roles in ensuring that persons with serious illness receive high-quality care, and their responsibilities often increase as patients transition from receiving solely curative-focused care to primarily palliative-focused care. Integrating family caregivers into the health care team and supporting them in their role has significant benefits for family caregivers, patients, health care systems, communities, and society. Palliative care clinicians across all disciplines are uniquely suited to provide necessary training and support to family caregivers as they navigate the demands of their role. Here, we contend that providing comprehensive palliative care includes addressing the needs of family caregivers and provide ten tips and practical guidance to assist palliative care clinicians to support family caregivers. Engaging family caregivers as partners in care will ultimately allow palliative care clinicians to deliver the highest quality patient care and ensure the best possible outcomes for families facing serious illnesses.

What Is Most Important to Family Caregivers When Helping Patients Make Treatment-Related Decisions: Findings from a National Survey.

Prioritizing patient values-who/what matters most-is central to palliative care and critical to treatment decision making. Yet which factors are most important to family caregivers in these decisions remains understudied. Using data from a U.S. national survey of cancer caregivers (N = 1661), we examined differences in factors considered very important by caregivers when partnering with patients in cancer treatment decision making by cancer stage and caregiver sociodemographics. Fifteen factors were rated on a 4-point Likert-scale from 'very unimportant' to 'very important.' Descriptive statistics were used to characterize caregiver factors and tabulate proportions of importance for each. Generalized linear mixed effect modeling was used to examine the importance of factors by cancer stage, and chi-square analyses were performed to determine associations between caregiver sociodemographics and the five most commonly endorsed factors: quality of life (69%), physical well-being (68%), length of life (66%), emotional well-being (63%), and opinions/feelings of oncology team (59%). Significant associations (all p's < 0.05) of small magnitude were found between the most endorsed factors and caregiver age, race, gender, and ethnicity, most especially 'opinions/feelings of the oncology team'. Future work is needed to determine the best timing and approach for eliciting and effectively incorporating caregiver values and preferences into shared treatment decision making.

The impact of employment loss on mentally unhealthy days among LGBTQ+ cancer survivors during the COVID-19 pandemic: Findings from the OUT National Survey.

OBJECTIVE: Lesbian, Gay, Bisexual, Transgender, Queer, and all other sexual and gender minority (LGBTQ+) populations made up 7.1% of the US population in 2021. LGBTQ+ cancer survivors face a variety of economic and mental health disparities; however, the determinants of poor mental health among LGBTQ+ cancer survivors are understudied. METHODS: This analysis utilized the OUT National Survey which consists of N = 2233 LGBTQ+ cancer survivors (complete cases). Multivariable negative binomial and logit regression models were used to generate predicted values, predicted probabilities, and average marginal effects (AME) to assess the association between COVID-19 related employment loss and mentally unhealthy days (MUDs) and frequent mental distress among LGBTQ+ cancer survivors. Predicted values and marginal effects were generated with interaction terms (demographics interacted with employment loss) to explore the heterogeneity of the effect of employment loss among LGBTQ+ sub-populations. RESULTS: In bivariate analyses employment loss was associated with a higher number of MUDs (10.3, SD = 9.9 vs. 8.4, SD = 9.6; p-value<0.001) and frequent mental distress (34% vs. 26%; p-value = 0.001). AME from a multivariable negative binomial model revealed that employment loss was associated with 1.42 more MUDs (95%CI: 0.33-2.86). Demographic factors such as some sexual orientations, cis-female and non-binary gender, younger age, and a current cancer diagnosis were also associated with significant expected increases in the number of MUDs. When assessing the heterogeneity of the effect of employment loss some sub-populations experienced changes in the number of MUDs that pushed them over the threshold of frequent mental distress while others did not. Furthermore, identifying with multiple sexual orientations (AME: 0.19, 95%CI: 0.11-0.27), cis-female and non-binary genders (AME: 0.07, 95%CI: 0.2-0.12; AME: 0.18, 95%CI: 0.07-0.28), American Indian and Alaska Native race (AME: 0.17, 95%CI: 0.03-0.31), and a current cancer diagnosis (AME: 0.14, 95%CI: 0.09-0.19) were associated with an increase in the probability of experiencing frequent mental distress. CONCLUSIONS: COVID-19 related employment loss negatively impacted the mental health of LGBTQ+ cancer survivors. LGBTQ+ specific supportive services as well as equity-based employment and income interventions are needed.

Family caregiver roles and challenges in assisting patients with cancer treatment decision-making: Analysis of data from a national survey.

BACKGROUND: We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision-making. METHODS: Family caregiver-reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021-7/2021). Four select-all-that-apply caregiver roles were explored: (1) observer (patient as primary decision-maker); (2) primary decision-maker; (3) shared decision-maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ2 and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. RESULTS: Of 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision-making role, 53.9% a shared decision-making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = -0.581, Wald = 10.69, p < .01). CONCLUSIONS: Most caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. PATIENT OR PUBLIC CONTRIBUTION: The CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision-making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.

Financial hardship differences by LGBTQ+ status among assigned female at birth adolescent and young adult cancer survivors: a mixed methods analysis.

BACKGROUND: Adolescent and young adult (AYA) cancer survivors are at an elevated risk of financial hardship. However, financial hardship among LGBTQ+ AYAs has not been widely explored. Thus, we used qualitative and quantitative survey data from the Horizon Study cohort to assess financial hardship of AYAs by LGBTQ+ status. METHODS: Multivariable logit models, predicted probabilities, average marginal effects or differences in predicted probabilities (AME) and 95% confidence intervals (CI) were used to assess the association of LGBTQ+ status and two components of financial hardship: material and psychological. Qualitative content analysis of an open-ended survey question about financial sacrifices was used to describe the third component of financial hardship, behavioral. RESULTS: Among 1,635 participants, 4.3% self-identified as LGBTQ+. Multivariable logit models controlling for demographic factors revealed that LGBTQ+ AYAs had an 18-percentage point higher probability of experiencing material financial hardship (95%CI 6-30%) and a 14-percentage point higher probability of experiencing psychological financial hardship (95%CI 2-26%) than non-LGBTQ+ AYAs. Controlling for economic factors attenuated the association of LGBTQ+ status with psychological financial hardship (AME = 11%; 95%CI - 1-23%), while the material financial hardship association remained statistically significant (AME = 14%; 95%CI 3-25%). In the qualitative analysis, LGBTQ+ AYAs frequently reported educational changes and costs (e.g., quitting school), unpaid bills and debt (e.g., medical debt, taking on credit card debt), as well as changes in housing and poor housing conditions (e.g., moving into less expensive house). CONCLUSIONS: LGBTQ + targeted and tailored interventions are needed to move toward equity for LGBTQ+ AYAs-an overlooked minority population.

Association of patient-reported financial barriers with healthcare utilization among Medicare beneficiaries with a history of cancer.

PURPOSE: We examined characteristics associated with financial barriers to healthcare and the association of financial barriers with adverse healthcare events among US adult cancer survivors enrolled in Medicare. METHODS: We used nationally representative Medicare Current Beneficiary Survey data (2011-2013, 2015-2017) to identify adults with a history of non-skin cancer. We defined financial barriers as cost-related trouble accessing and/or delayed care in the prior year. Using propensity-weighted multivariable logistic regression, we examined associations between financial barriers and adverse healthcare events (any ED visits, any inpatient hospitalizations). RESULTS: Overall, 11.0% of adult Medicare beneficiaries with a history of cancer reported financial barriers in the prior year, with higher burden among beneficiaries < 65 years of age vs. ≥ 65 (32.5% vs. 8.2%, p < 0.0001) and with annual income < $25,000 vs. ≥ $25,000 (18.1% vs. 6.9%, p < 0.0001). In bivariate models, financial barriers were associated with a 7.8 percentage point (95% CI: 1.5-14.0) increase in the probability of ED visits. In propensity-weighted models, this association was not statistically significant. The association between financial barriers and hospitalizations was not significant in the overall population; however, financial barriers were associated with a decreased probability of hospitalization among Black/African American beneficiaries. CONCLUSIONS: Despite Medicare coverage, beneficiaries with a history of cancer are at risk for experiencing financial barriers to healthcare. In the overall population, financial barriers were not associated with ED visits or hospitalizations. IMPLICATIONS FOR CANCER SURVIVORS: Policies limiting Medicare patient out-of-pocket spending and care models addressing health-related social needs are needed to reduce financial barriers experienced.

Rural resilience during COVID-19: the lived experience of North Carolinian rural-dwelling cancer caregivers.

PURPOSE: To illuminate the lived experience of resilience in rural-dwelling North Carolinian cancer caregivers at the intersection of cancer and the COVID-19 pandemic. METHODS: In spring, 2020, we recruited self-identified primary caregivers (CGs) for a relative/friend with cancer living in a rural area. We conducted cross-sectional semi-structured interviews and then thematically analyzed transcripts to identify and categorize instances of stressors and benefit-finding. RESULTS: Of the 24 participants, 29% were < 50 years old, 42% identified as non-Hispanic Black, 75% were women, and 58% were spousal CGs. Most care recipients (CRs) had stage IV cancer (n = 20) and cancer types varied. Participants played a variety of roles in caregiving and experienced stressors related to caregiving demands (e.g., conflicts with other responsibilities), rurality (e.g., transportation), and the COVID-19 pandemic (e.g., new visitor policy at hospital). Despite stressful experiences, participants also identified many positive aspects of their caregiving. Five domains of benefit-finding were identified: appreciation (e.g., gratitude toward their ability to care for CRs), CG-CR dyad relationship dynamics (e.g., increased closeness), interpersonal relationship dynamics (e.g., perceived peer support), faith (e.g., ability to cope through praying), and personal growth (e.g., new skills learned from caregiving). CONCLUSION: Rural-dwelling cancer caregivers from mixed sociodemographic backgrounds identified a diverse range of benefits from caregiving, despite experiencing multiple stressors, including emergent stressors from the COVID-19 pandemic. Healthcare delivery serving rural communities may consider expanding transportation assistance and boosting benefit-finding to ameliorate stress in cancer caregivers.

"A lot to manage and still have some kind of a life": How multiple myeloma impacts the function and quality-of-life of Black-White patient-caregiver dyads.

BACKGROUND: Multiple myeloma (MM) is an incurable debilitating blood cancer associated with the lowest health related quality of life (HRQoL) of all cancers. With nearly 88% of adults aged ≥55 years at diagnosis, age-associated physical losses, comorbidities, and social factors contribute to worsening HRQoL. This qualitative study assessed dyadic (patient-informal caregiver) perspectives on the factors contributing to HRQoL in MM survivors. METHODS: We recruited 21 dyads from the UNC-Chapel Hill Lineberger Comprehensive Cancer between 11/2021 and 04/2022. Participants completed a single dyadic semistructured interview capturing broad perspectives on MM. We used ATLAS. ti v 9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk, Inc.). This iterative approach allowed the exploration and identification of themes within and across transcripts. RESULTS: The mean age at enrollment was 71 years (median: 71, range: 57-90) for patients and 68 years (median 67, range: 37-88) for caregivers. All dyads were racially concordant (11 Black/AA and 10 White). However, we aggregated the findings due to no consistent racial differences. Six themes related to (1) physical burden, (2) treatment challenges, (3) losses of independence, (4) caregiver burden, (5) patient and caregiver perseverance, and (6) adjustment to a new normal were identified. Dyads also experienced MM together, resulting in patients and caregivers experiencing changes in their ability to engage in physical and social activities, which further contributed to poor HRQoL. Patients' increased need for social support led to shifts in the caregiver roles, resulting in caregivers feeling burdened by their responsibilities. All dyads acknowledged the need for perseverance and adaptability to a new normal with MM. CONCLUSION: The functional, psychosocial, and HRQoL of older patients with MM and their caregivers remain impacted ≥6 months after a new diagnosis highlighting clinical and research opportunities to focus on preserving or improving the health of dyads living with MM.

Facing financial barriers to healthcare: patient-informed adaptation of a conceptual framework for adults with a history of cancer.

Background: Cancer-related financial hardship is associated with negative clinical outcomes, which may be partially explained by cost-related delayed or forgone care in response to financial barriers. We sought to understand patient experiences facing financial barriers to medical care following a cancer diagnosis. Methods: We conducted virtual, semi-structured interviews in Fall 2022 with 20 adults with a history of cancer who had experienced cancer-related financial hardship in the prior year. We used template analysis within a pragmatic paradigm, combining constructivist and critical realist theoretical perspectives, to analyze interview transcripts and adapt an existing conceptual framework of financial barriers to care. Results: The majority of interviewees identified as women (70%), non-Hispanic white (60%), and reported an annual household income of <$48,000 (60%). As interviewees sought to overcome financial barriers, they described substantial frustration at the limitations and complexities of United States health and social care systems, resulting in a reliance on a fragmented, uncertain resource landscape. The administrative burden resulting from bureaucratic systems and the advocacy responsibilities required to navigate them ultimately fell on interviewees and their caregivers. Thus, participants described their ability to overcome financial barriers as being influenced by individual and interpersonal factors, such as social support, comfort asking for help, time, prior experience navigating resources, and physical and mental health. However, participants noted health system organizational factors, such as whether all new patients proactively met with a social worker or financial navigator, as having the potential to lessen the administrative and financial burden experienced. Conclusion: We present an adapted conceptual framework outlining multi-level factors influencing patient experiences coping with financial barriers to medical care. In addition to influencing whether a patient ultimately delays or forgoes care due to cost, financial barriers also have the potential to independently affect patient mental, physical, and financial health.