Health Insurance Navigation Tools Intervention: A Pilot Trial Within the Childhood Cancer Survivor Study.

PURPOSE: Childhood cancer survivors are at increased risk for underinsurance and health insurance-related financial burden. Interventions targeting health insurance literacy (HIL) to improve the ability to understand and use health insurance are needed. METHODS: We codeveloped a four-session health insurance navigation tools (HINT) intervention, delivered synchronously by a patient navigator, and a corresponding booklet. We conducted a randomized pilot trial with survivors from the Childhood Cancer Survivor Study comparing HINT with enhanced usual care (EUC; booklet). We assessed feasibility, acceptability, and preliminary efficacy (HIL, primary outcome; knowledge and confidence with health insurance terms and activity) on a 5-month survey and exit interviews. RESULTS: Among 231 invited, 82 (32.5%) survivors enrolled (53.7% female; median age 39 years, 75.6% had employer-sponsored insurance). Baseline HIL scores were low (mean = 28.5; 16-64; lower scores better); many lacked knowledge of Affordable Care Act (ACA) provisions. 80.5% completed four HINT sessions, and 93.9% completed the follow-up survey. Participants rated HINT's helpfulness a mean of 8.9 (0-10). Exit interviews confirmed HINT's acceptability, specifically its virtual and personalized delivery and helpfulness in building confidence in understanding one's coverage. Compared with EUC, HINT significantly improved HIL (effect size = 0.94. P < .001), ACA provisions knowledge (effect size = 0.73, P = .003), psychological financial hardship (effect size = 0.64, P < .006), and health insurance satisfaction (effect size = 0.55, P = .03). CONCLUSION: Results support the feasibility and acceptability of a virtual health insurance navigation program targeted for childhood survivors to improve HIL. Randomized trials to assess the efficacy and sustainability of health insurance navigation on HIL and financial burden are needed.

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.

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.

Cancer survivors' financial hardship and their caregivers' employment: results from a statewide survey.

PURPOSE: Many caregivers take paid and/or unpaid time off work, change from full-time to part-time, or leave the workforce. We hypothesized that cancer survivor-reported material hardship (e.g., loans, bankruptcy), behavioral hardship (e.g., skipping care/medication due to cost), and job lock (i.e., staying at a job for fear of losing insurance) would be associated with caregiver employment changes. METHODS: Adult cancer survivors (N = 627) were surveyed through the Utah Cancer Registry in 2018-2019, and reported whether their caregiver had changed employment because of their cancer (yes, no). Material hardship was measured by 9 items which we categorized by the number of instances reported (0, 1-2, and ≥ 3). Two items represented both behavioral hardship (not seeing doctor/did not take medication because of cost) and survivor/spouse job lock. Odds ratios (OR) were estimated using survey-weighted logistic regression to examine the association of caregiver employment changes with material and behavioral hardship and job lock, adjusting for cancer and sociodemographic factors. RESULTS: There were 183 (29.2%) survivors reporting their caregiver had an employment change. Survivors with ≥ 3 material hardships (OR = 3.13, 95%CI 1.68-5.83), who skipped doctor appointments (OR = 2.88, 95%CI 1.42-5.83), and reported job lock (OR = 2.05, 95%CI 1.24-3.39) and spousal job lock (OR = 2.19, 95%CI 1.17-4.11) had higher odds of caregiver employment changes than those without these hardships. CONCLUSIONS: Caregiver employment changes that occur because of a cancer diagnosis are indicative of financial hardship. IMPLICATIONS FOR CANCER SURVIVORS: Engaging community and hospital support for maintenance of stable caregiver employment and insurance coverage during cancer may lessen survivors' financial hardship.

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.

"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.

HPV Vaccine Experiences and Preferences Among Young Adult Cancer Survivors and Caregivers of Childhood Cancer Survivors.

Cancer survivors are at higher risk of developing HPV-associated cancers later in life, yet their HPV vaccination rates remain lower than the general population. Improving HPV vaccination uptake among survivors is essential to preventing second malignancies. We interviewed HPV vaccine eligible adolescent and young adult (AYA) cancer survivors (18-26 years) and caregivers of HPV vaccine eligible childhood cancer survivors approaching the AYA age range (9-17 years) about their HPV vaccine experiences and preferences as informed by the HPV Vaccination Roundtable Best Practices. Interviews (N = 20) were recorded, transcribed, and analyzed using interpretive description. Of AYA survivors (n = 10), 50% had received at least one HPV vaccine dose. Of caregivers (n = 10), 30% reported their child had received at least one HPV vaccine dose. Three distinct categories emerged including (1) HPV vaccine knowledge, (2) HPV vaccination recommendation preferences, and (3) HPV vaccination reminder preferences. The first two categories were oncology focused. Participants lacked knowledge regarding HPV vaccine safety and applicability due to their complex cancer history. Most participants strongly preferred that their oncologist provide an HPV vaccine recommendation. The third category was mixed, with some participants preferring oncology-based HPV vaccine reminders while others preferred primary care-based reminders. Almost all participants preferred digital reminders (e.g., text messages). Our results suggest that oncologists play an essential role in recommending the HPV vaccine and providing information to assist survivors and caregivers with vaccine decision-making. Additionally, HPV vaccination uptake among pediatric and childhood and AYA survivors could be improved through the use of tailored, electronically delivered vaccine reminders.

Perceptions and knowledge of air pollution and its health effects among caregivers of childhood cancer survivors: a qualitative study.

BACKGROUND: Emerging research suggests that survivors of childhood and adolescent cancers are at risk for morbidity and mortality associated with air pollutants. However, caregiver perceptions of the effects of air pollution are unknown. Thus, to address this gap we described caregivers' perceptions of air pollution's impact on general population health and specifically on childhood cancer survivors, and caregivers' air pollution information-seeking and exposure reduction behaviors. METHODS: Participants were Utah residents, ≥18 years, and caregiver of a childhood cancer survivor who had completed treatment. Semi-structured interviews were conducted with caregivers to describe their perspectives on air quality, how air pollution impacts health (general population and survivor health), and their information seeking and exposure reduction behaviors. Interviews were recorded, transcribed, and analyzed through two rounds of structured coding. RESULTS: Caregivers (N = 13) were non-Hispanic white and primarily females (92.3%) between 30 and 49 years old (46.2%). Most families lived within the Wasatch Front (69.2%), the main metropolitan of Utah. Two categories emerged pertaining to caregiver's perceptions of air pollution: 1) Limited awareness about the health effects of air pollution, and 2) Unsuccessful information seeking and minimal exposure reduction behaviors. All caregivers held negative perceptions of air pollution in Utah, but most were unaware of how pollution affects health. While some families limited air pollution exposure by avoiding outdoor activity or physically leaving the region, few practiced survivor-specific exposure reduction. Nearly half of caregivers worried about potential effects of air pollution on survivor health and wanted more information. CONCLUSIONS: Despite negative perceptions of air pollution, caregivers were divided on whether air pollution could impact survivor health. Few caregivers engaged in exposure reduction for their cancer survivor. As air pollution levels increase in the U.S., continued research on this topic is essential to managing cancer survivor respiratory and cardiovascular health.

COVID-19 Vaccine Hesitancy Among Adolescent and Young Adult Cancer Survivors.

The study objective was to identify sociodemographic and coronavirus disease 2019 (COVID-19) factors that are associated with COVID-19 vaccine hesitancy among adolescent and young adult (AYA) cancer survivors. Eligible participants were 18 years or older and were diagnosed with cancer as an AYA (ages 15-39 years) and received services through an AYA cancer program. A total of 342 participants completed a cross-sectional survey. Our primary outcome-COVID-19 vaccine hesitancy-was surveyed as a 5-point Likert scale and operationalized as a binary outcome (agree vs hesitant). A large proportion of participants reported COVID-19 vaccine hesitancy (37.1%). In the multivariable regression, female survivors (odds ratio = 1.81, 95% confidence interval = 1.10 to 2.98) and survivors with a high school education or less (odds ratio = 3.15, 95% confidence interval = 1.41 to 7.04) reported higher odds of vaccine hesitancy compared with their male or college graduate or higher counterparts. COVID-19 vaccine hesitancy persists among AYA survivors despite their recommended priority vaccination status and higher chances of severe COVID-19 outcomes.

Influence of provider recommendations to restart vaccines after childhood cancer on caregiver intention to vaccinate.

PURPOSE: We studied the influence of oncology and primary care provider (PCP) recommendations on caregiver intentions to restart vaccines (e.g., catch-up or boosters) after cancer treatment. METHODS: We surveyed primary caregivers ages 18 or older with a child who had completed cancer treatment 3-36 months prior (N = 145) about demographics, child's vaccination status, and healthcare factors (e.g., provider recommendations, barriers, preferences for vaccination). We compared these factors by caregiver's intention to restart vaccines ("vaccine intention" vs. "no intent to vaccinate") using bivariate and multivariable analyses. RESULTS: Caregivers were primarily ages 30-39 years (54.9%), mothers (80.6%), college graduates (44.4%), non-Hispanic (89.2%), and married (88.2%). Overall, 34.5% of caregivers did not know which vaccines their child needed. However, 65.5% of caregivers reported vaccine intention. Fewer caregivers with no intention to vaccinate believed that vaccinating their child helps protect others (85.4 vs. 99.0%, p < 0.01), that vaccines are needed when diseases are rare (83.7 vs. 100.0%, p < 0.01), and that vaccines are safe (80.4 vs. 92.6%, p = 0.03) and effective (91.5 vs. 98.9%, p = 0.04) compared with vaccine intention caregivers, respectively. Provider recommendations increased caregivers' likelihood of vaccine intention (oncologist RR = 1.65, 95% CI 1.27-2.12, p < 0.01; PCP RR = 1.51, 95% CI 1.19-1.94, p < 0.01). CONCLUSIONS: Provider recommendations positively influence caregivers' intention to restart vaccines after childhood cancer. Guidelines are needed to support providers in making tailored vaccine recommendations. IMPLICATIONS FOR CANCER SURVIVORS: Timely vaccination after childhood cancer protects patients against vaccine-preventable diseases during survivorship. Caregivers may benefit from discussing restarting vaccinations after cancer with healthcare providers.