Material financial hardship and insurance-related experiences among Utah's rural and urban cancer survivors.

PURPOSE: Describe material financial hardship (e.g., using savings, credit card debt), insurance, and access to care experienced by Utah cancer survivors; investigate urban-rural differences in financial hardship. METHODS: Cancer survivors were surveyed from 2018 to 2021 about their experiences with financial hardship, access to healthcare, and job lock (insurance preventing employment changes). Weighed percentage responses, univariable and multivariable logistic regression models for these outcomes compared differences in survivors living in rural and urban areas based on Rural-Urban Commuting Area Codes. RESULTS: The N = 1793 participants were predominantly Non-Hispanic White, female, and 65 or older at time of survey. More urban than rural survivors had a college degree (39.8% vs. 31.0%, p = 0.04). Overall, 35% of survivors experienced ≥ 1 financial hardship. In adjusted analyses, no differences were observed between urban and rural survivors for: material financial hardship, the overall amount of hardship reported, insurance status at survey, access to healthcare, or job lock. Hispanic rural survivors were less likely to report financial hardship than Hispanic urban survivors (odds ratio (OR) = 0.24, 95%CI = 0.08-0.73)). Rural survivors who received chemo/immune therapy as their only treatment were more likely to report at least one instance of financial hardship than urban survivors (OR = 2.72, 95%CI = 1.08-6.86). CONCLUSIONS: The relationship between rurality and financial hardship among survivors may be most burdensome for patients whose treatments require travel or specialty medication access. IMPLICATIONS FOR CANCER SURVIVORS: The impact of living rurally on financial difficulties after cancer diagnoses is complex. Features of rurality that may alter financial difficulty after a cancer diagnosis may vary geographically and instead of considering rurality as a stand-alone factor, these features should be investigated independently.

Health Insurance Literacy Improvements Among Recently Diagnosed Adolescents and Young Adults With Cancer: Results From a Pilot Randomized Controlled Trial.

PURPOSE: Adolescents and young adults (AYAs; age 18-39 years) with cancer report needing support with health insurance. We conducted a pilot randomized controlled trial to assess the feasibility and acceptability of a virtual health insurance navigation intervention (HIAYA CHAT) to improve health insurance literacy (HIL), awareness of Affordable Care Act (ACA) protections, financial toxicity, and stress. MATERIALS AND METHODS: HIAYA CHAT is a four-session navigator delivered program; it includes psychoeducation on insurance, navigating one's plan, insurance-related laws, and managing costs. Participants were eligible if they could access an internet-capable device, were <1 year from diagnosis, and received treatment from University of Utah Healthcare or Intermountain Health systems. We assessed the feasibility, acceptability, and preliminary efficacy of HIAYA CHAT compared with usual navigation care, including HIL (nine items), insurance knowledge (13 items), ACA protections (eight items), COmprehensive Score for financial Toxicity (COST; 11 items), and Perceived Stress Scale (PSS; four items), using t tests and Cohen's d. RESULTS: From November 2020 to December 2021, N = 86 AYAs enrolled (44.6% participation) and 89.3% completed the 5-month follow-up survey; 68.6% were female, 72.1% were White, 23.3% were Hispanic, 65.1% were age 26-39 years, and 87.2% were privately insured. Of intervention participants (n = 45), 67.4% completed all four sessions; among an exit interview subset (n = 10), all endorsed the program (100%). At follow-up, compared with usual navigation care, intervention participants had greater improvements in HIL, insurance and ACA protections knowledge, and PSS; effect sizes ranged from moderate to large (0.42-0.77). COST did not differ. CONCLUSION: The results support the feasibility and acceptability of HIAYA CHAT with related improvements in HIL.

Age-related differences in employment, insurance, and financial hardship among colorectal cancer patients: a report from the ColoCare Study.

PURPOSE: Employment and financial hardships are common issues for working-age colorectal cancer patients. We surveyed colorectal cancer survivors to investigate employment, insurance, and financial outcomes by age at diagnosis. METHODS: Cross-sectional survey of six ColoCare Study sites regarding employment, insurance, and financial hardship outcomes. Eligible participants were 1 to 5 years from colorectal cancer diagnosis. Diagnosis age (18-49, 50-64, 65+ years) with outcomes of interest were compared using chi-square and t-tests. Multivariable logistic and Poisson regressions were fit to examine association of demographic factors with any material/psychological hardship (yes/no) and the count of hardships. RESULTS: N = 202 participants completed the survey (age: 18-49 (n = 42, 20.8%), 50-64 (n = 79, 39.1%), 65+ (n = 81, 40.1%)). Most diagnosed age < 65 worked at diagnosis (18-49: 83%; 50-64: 64%; 65+ : 14%, p < 0.001) and continued working after diagnosis (18-49: 76%; 50-64: 59%; 65+ : 13%; p < 0.001). Participants age 18-49 reported cancer-related difficulties with mental (81.3%) and physical (89%) tasks at work more than those working in the older age groups (45%-61%). In regression models, among those reporting any hardship, the rates of material and psychological hardships were higher among those age 18-64 (Incidence Rate Ratios (IRR) range 1.5-2.3 vs. age 65+) and for those with < college (IRR range 1.3-1.6 vs. college +). CONCLUSIONS: Younger colorectal cancer patients are more likely to work after a cancer diagnosis and during cancer treatment, but report higher levels of financial hardship than older patients. IMPLICATIONS FOR CANCER SURVIVORS: Younger colorectal cancer patients may encounter financial hardship, thus may feel a need to work during and after treatment.

COVID-19-Related Employment Disruptions and Increased Financial Burden Among Survivors of Adolescent and Young Adult Cancer.

Background: Financial burden is a major concern for survivors of adolescent and young adult (AYA) cancers. We identified if employment disruptions during the COVID-19 pandemic affected AYA survivors' financial burden. Methods: AYAs who were enrolled in a cancer patient navigation program were e-mailed a survey in fall 2020. Survey items included sociodemographics, employment disruption, and two measures of financial burden: COmprehensive Score for Financial Toxicity (COST) and material and behavioral financial hardship items (for any reason, COVID-19 induced, cancer induced). Financial burden outcomes were dichotomized at the median (COST = 21; financial hardship = 3). The association of employment disruptions and sociodemographics with financial burden was assessed using multivariable logistic regression models. Results: Reduced hours/job loss was reported by 24.0% of 341 participants. Survivors with a high school education or less (odds ratio [OR]: 2.70; 95% confidence interval [CI]: 1.21-6.03) or who had decreased hours or job loss (OR: 3.97; 95% CI: 2.01-7.84) had greater odds for high financial toxicity. Reduced hours/job loss was the only factor associated with high material and behavioral financial hardship for both any reason (OR: 2.75; 95% CI: 1.41-5.33) and owing to COVID-19 (OR: 4.98; 95% CI: 2.28-10.92). Cancer treatment since March 2020 was associated with cancer-induced high material and behavioral financial hardship (OR: 3.31; 95% CI: 1.96-5.58). Conclusion: Employment disruptions owing to the COVID-19 pandemic, lower education levels, and cancer treatment were associated with high financial burden among AYA cancer survivors. Our findings suggest the need for multilevel interventions to identify and address financial burden among vulnerable cancer survivors.

Sources of informal financial support among adolescent and young adult cancer survivors: a mixed methods analysis from the HIAYA CHAT study.

PURPOSE: The purpose of this exploratory sequential mixed methods study was to describe the sources of informal financial support used by adolescent and young adult (AYA) cancer survivors and how financial toxicity and demographic factors were associated with different types and magnitudes of informal financial support. METHODS: This analysis is part of a larger health insurance literacy study that included pre-trial interviews and a randomized controlled trial (RCT) for AYA cancer survivors. Eligible study participants were 18 years of age, diagnosed with cancer as an AYA (15-39 years), insured, and for the RCT sample less than 1 year from diagnosis. Interview audio was transcribed, quality checked, and thematically analyzed. RCT baseline and follow-up surveys captured informal financial support use. Chi-squared and Fisher's exact tests were used to assess differences in informal financial support type use and frequency by financial toxicity and AYA demographics. RESULTS: A total of N = 24 and N = 86 AYAs participated in pre-trial interviews and the RCT respectively. Interview participants reported a variety of informal financial support sources including savings, community, family/friends, and fundraisers. However, only half of participants reported their informal financial support to be sufficient. High financial toxicity was associated with the most types of informal financial support and a higher magnitude of use. The lowest income group accessed informal financial supports less frequently than higher income groups. CONCLUSION: Our study demonstrates that AYA survivors experiencing financial toxicity frequently turn to informal sources of financial support and the magnitude is associated with financial toxicity. However, low-income survivors, and other at-risk survivors, may not have access to informal sources of financial support potentially widening inequities.

Adaptation and Development of a Health Insurance Education Program for Adolescent and Young Adult Cancer Patients.

Introduction: Adolescent and young adult (AYA) cancer patients report low health insurance literacy. We interviewed AYAs to gain their perspectives on the content and delivery of the Huntsman-Intermountain adolescent and young adult cancer health insurance (HIAYA CHAT) program. Methods: From October 2019 to March 2020, we interviewed N = 24 insured AYAs with cancer aged 18-39 years. Participants were recruited by study staff and social media. We elicited feedback on proposed HIAYA CHAT content including insurance terms/definitions, insurance coverage components, insurance legislation, cost management, and the suitability of the intervention delivery. Interviews were audio recorded, transcribed, and inductively analyzed using NVivo 12. We coded feedback into three categories of results: (1) delivery of HIAYA CHAT, (2) endorsements of proposed HIAYA CHAT content, and (3) recommendations to expand and improve HIAYA CHAT. Results: Participants were 58% female, 79% non-Hispanic white, and 79% receiving cancer treatment. First, AYAs felt that three to four different content areas, each 30 minutes or less, seemed feasible and that delivery should be through an online platform. Second, participants reflected on times during their treatment when having more insurance knowledge (e.g., appeals process) would have been useful, endorsing content about insurance policies, legal protections, and legislative impacts on health care costs. Third, AYAs recommended evaluating patients' health insurance literacy before starting HIAYA CHAT and wanted concrete learning tools (e.g., sample medical bills and budgeting). Conclusion: AYAs with cancer wanted health insurance education to include information about insurance policies and protections using tangible examples through an online delivery. Describing AYAs preferences for interventions may improve relevance and efficacy of the program. Clinical Trial Registration: ClinicalTrials.gov Identifier: NCT04448678.

Financial burdens during the COVID-19 pandemic are related to disrupted healthcare utilization among survivors of adolescent and young adult cancers.

PURPOSE: We examined whether financial burdens occurring during the COVID-19 pandemic impacted healthcare utilization among survivors of adolescent and young adult cancers. METHODS: We surveyed survivors enrolled in a patient navigation program to obtain self-reports of delayed/skipped cancer care or other care, changes to medication obtainment, and changes to medication use since the COVID-19 pandemic began. Reported financial burdens were defined as financial toxicity in the past 4 weeks (COmprehensive Score for financial Toxicity [COST] ≤ median 21) and material hardships (range = 4-11) since March 2020. Adjusted logistic regression models calculated associations and effect modification by gender. RESULTS: Survivors (n = 341) were mostly female (61.3%) and non-Hispanic White (83.3%). Nearly 20% delayed/skipped cancer care, 35.2% delayed/skipped other care, 19.1% changed medication obtainment, and 12.6% changed medication use. Greater material hardships were associated with delayed/skipped cancer care (odds ratio (OR) = 3.13, 95% CI = 1.44-6.81) and other care (OR = 2.17, 95% CI = 1.18-3.98), and changed medication obtainment (OR = 2.72, 95% CI = 1.43-5.18) or use (OR = 4.49, 95% CI = 2.05-9.80). Financial toxicity was associated with delayed/skipped other care (OR = 2.53, 95% CI = 1.31-4.89) and changed medication obtainment (OR = 1.96, 95% CI = 1.01-3.83) and medication use (OR = 3.73, 95% CI = 1.59-8.73). The association of material hardships and any changes in healthcare utilization was greater among female compared to male survivors. CONCLUSION: Financial burdens experienced during the pandemic impeded survivors' ability to utilize necessary healthcare, with worse impacts among female survivors. IMPLICATIONS FOR CANCER SURVIVORS: Delayed or skipped healthcare may lead to an increased cancer mortality or severity of therapy-related conditions. Providing resources that enable survivors experiencing financial burdens to continue critical cancer and preventive care during the COVID-19 pandemic is a priority.

HIAYA CHAT study protocol: a randomized controlled trial of a health insurance education intervention for newly diagnosed adolescent and young adult cancer patients.

BACKGROUND: For adolescent and young adult (AYA) cancer patients aged 18 to 39 years, health insurance literacy is crucial for an effective use of the health care system. AYAs often face high out-of-pocket costs or have unmet health care needs due to costs. Improving health insurance literacy could help AYAs obtain appropriate and affordable health care. This protocol illustrates a randomized controlled trial testing a virtual health insurance education intervention among AYA patients. METHODS: This is a two-arm multisite randomized controlled trial. A total of 80 AYAs diagnosed with cancer in the Mountain West region will be allocated to either usual navigation care or tailored health insurance education intervention with a patient navigator that includes usual care. All participants will complete a baseline and follow-up survey 5 months apart. The primary outcomes are feasibility (number enrolled and number of sessions completed) and acceptability (5-point scale on survey measuring satisfaction of the intervention). The secondary outcomes are preliminary efficacy measured by the Health Insurance Literacy Measure and the COmprehensive Score for financial Toxicity. DISCUSSION: This trial makes a timely contribution to test the feasibility and acceptability of a virtual AYA-centered health insurance education program. TRIAL REGISTRATION: ClinicalTrials.gov NCT04448678. Registered on June 26, 2020.

Financial Burden and Mental Health Among LGBTQIA+ Adolescent and Young Adult Cancer Survivors During the COVID-19 Pandemic.

Background: In the United States, the cost of cancer treatment can lead to severe financial burden for cancer survivors. The economic impacts of the COVID-19 pandemic compound cancer survivors' financial challenges. Financial burden may be particularly challenging for lesbian, gay, bisexual, transgender, queer, intersex, asexual and other sexual and gender minority (LGBTQIA+) survivors. LGBTQIA+ survivors who are adolescent and young adults (AYA) may face elevated financial burden due to multiple, intersecting identities. Methods: An explanatory sequential mixed methods design was applied, beginning with a survey of AYA cancer survivors in the Mountain West region of the United States. Survey measures included demographics, COVID-19 impacts, the COmprehensive Score for financial Toxicity (COST), Perceived Stress Scale-4 (PSS-4), and PROMIS anxiety and depression scales. Two-way t-tests were used to analyze differences in outcomes between LGBTQIA+ and non-LGBTQIA+ AYAs. All LGBTQIA+ survey participants were invited to complete an interview, and those who agreed participated in descriptive interviews about financial burden due to cancer, COVID-19, and LGBTQIA+ identity. Interviews were audio recorded, transcribed, and analyzed using Dedoose. Results: Survey participants (N=325) were LGBTQIA+ (n=29, 8.9%), primarily female (n= 197, 60.6%), non-Hispanic White (n= 267, 82.2%), and received treatment during COVID-19 (n= 174, 54.0%). LGBTQIA+ interview participants (n=9, 100%) identified as a sexual minority and (n=2, 22.2%) identified as a gender minority. Most were non-Hispanic White (n=6, 66.7%) and had received treatment during COVID-19 (n=7, 77.8%). Statistical analyses revealed that LGBTQIA+ AYAs reported significantly worse COST scores than non-LGBTQIA+ AYAs (p=0.002). LGBTQIA+ AYAs also reported significantly higher PSS-4 (p=0.001), PROMIS anxiety (p=0.002) and depression scores (p<0.001) than non-LGBTQIA+ AYAs, reflecting worse mental health outcomes. High costs of cancer treatment and employment disruptions due to COVID-19 contributed to substantial financial stress, which exacerbated existing mental health challenges and introduced new ones. Conclusions: LGBTQIA+ AYA survivors reported substantial financial burden and psychological distress exacerbated by cancer, the COVID-19 pandemic, and LGBTQIA+ stigma. Given their multiple intersecting identities and potential for marginalization, LGBTQIA+ AYA survivors deserve prioritization in research to reduce financial burden and poor mental health.

"I thought there would be more I understood": health insurance literacy among adolescent and young adult cancer survivors.

BACKGROUND: Health insurance literacy is crucial for navigating the US healthcare system. Low health insurance literacy may be especially concerning for adolescent and young adult (AYA) cancer survivors. To describe AYAs' health insurance literacy, we conducted semi-structured interviews with AYA survivors, on and off of treatment. METHODS: We interviewed 24 AYA cancer survivors (aged 18-39 years) between November 2019 and March 2020. Interviews were recorded, transcribed, and quality-checked. Using two cycles of structured coding, we explored AYAs' health insurance literacy and examined thematic differences by policy holder status and age. RESULTS: AYAs were 58.3% female, 79.2% non-Hispanic White, 91.7% heterosexual, and 62.5% receiving cancer treatment. Most participants had employer-sponsored health insurance (87.5%), and 41.7% were their own policy holder. Four themes emerged; in the first theme, most AYAs described beginning their cancer treatment with little to no understanding of their health insurance. This led to the three subsequent themes in which AYAs reported: unclear expectations of what their insurance would cover and their out-of-pocket costs; learning about insurance and costs by trial and error; and how their health insurance literacy negatively impacted their ability to navigate the healthcare system. CONCLUSIONS: Our findings, while requiring confirmation in larger samples and in other health systems, suggest that the health insurance literacy needed to navigate insurance and cancer care is low among US AYA survivors and may have health and financial implications. As the burden of navigating insurance is often put on patients, health insurance education is an important supportive service for AYA survivors on and off of treatment.

Age-Related Differences in Financial Toxicity and Unmet Resource Needs Among Adolescent and Young Adult Cancer Patients.

Financial toxicity may differ by age at diagnosis between adolescents and young adults (AYAs) with cancer. We surveyed 52 AYA cancer patients about unmet needs and financial toxicity using the COmprehensive Score for financial Toxicity (COST). We compared outcomes by age at diagnosis (15-25-year olds [n = 25, 48%] vs. 26-39-year olds [n = 27, 52%]). AYAs diagnosed ages 26-39 reported that cancer negatively affected their finances more than 15-25-year olds (77.8% vs. 37.5%, p = 0.0005). Lower mean COST scores among those diagnosed ages 26-39 indicated greater financial toxicity compared to those 15-25 years (18.22 vs. 24.84, p = 0.02). Financial burden appears to be greater for older AYAs with cancer.