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Purpose Financial toxicity, cancer-treatment-related financial harm, is associated with expensive treatments like immunotherapy. The purpose of this study was to explore financial toxicity among advanced cancer patients receiving immunotherapies and their caregivers and, secondarily, to study how recent inflation and the COVID-19 pandemic impacted these experiences. Methods Advanced cancer patients receiving immunotherapies and their caregivers were recruited to participate in semi-structured interviews about supportive care needs from 2022 to 2023. The Comprehensive Score for Financial Toxicity was collected. Guided by Jones et al.’s cancer financial toxicity model, the content analysis was conducted by two trained coders using NVIVO R1. Results Sixteen patients and 10 caregivers (including 7 dyads) across 5 states participated in interviews in 2022–2023. Participants averaged 63.43 years (SD = 12.75), and patients received an average of 14.6 months of immunotherapy (SD = 9.415). The majority lived in non-metropolitan areas (67%) and were white (95%). Three theory-driven themes were developed: (1) Sources of Financial Toxicity, (2) Buffers of Financial Toxicity, and (3) Consequences of Financial Toxicity. Inflation was added to financial toxicity for non-metropolitan dwelling participants due to increased prices of gas and accommodation. Social support systems buffered the impact of financial toxicity. Material and psychological impacts of financial toxicity disproportionately affected younger and privately insured participants. Conclusion While immunotherapy patients face high medical costs of treatment, the burdens of accessing treatment for people living at a distance from the cancer center can exacerbate financial toxicity. Clinicians and researchers should also consider external financial pressures such as national economic impacts that compound the financial toxicity of treatment.

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

Purpose Though the need for risk-based follow-up care for survivors of adolescent and young adult (AYA) cancer has been documented, survivors often report forgoing recommended care due to cost. We sought to understand whether additional barriers to follow-up care exist for AYA survivors. Methods We recruited survivors who were diagnosed with cancer between the ages of 15 and 39 using the Utah Cancer Registry (UCR). Overall, 28 survivors participated in 6 focus groups held between March and May 2015 in Salt Lake City and St. George, UT. Focus group discussions focused on the reasons survivors may or may not attend recommended medical visits after completing therapy. Results Survivors reported myriad barriers to follow-up medical visits, including lack of clear provider recommendation, fear of recurrent cancer diagnosis, wishing to move on with life, competing life responsibilities due to work and children, and not perceiving the need for a visit due to lack of symptoms. Conclusions Though cost likely plays a major part in follow-up care adherence for survivors of AYA cancer, in our focus groups, participants indicated there were many other psychosocial and logistic barriers to care. Such factors play an important role in the day-to-day lives of survivors and are critical in medical decision-making. Implications for cancer survivors Several factors impede follow-up care adherence for survivors of AYA cancer that are amenable to interventions, including clearer provider recommendations, flexible appointment times, and childcare availability in clinics.

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.

Although access to pediatric cancer care has implications for use of such care and patient outcomes, little is known about the geographic accessibility of pediatric cancer care and how it may vary by population characteristics across the continental US. To estimate the travel time to pediatric cancer care settings in the continental US, identify potential disparities among subgroups of children and adolescents and young adults (AYAs), and identify areas needing improved access to pediatric cancer care. This cross-sectional study collected data from August 1 to December 1, 2021. Pediatric oncologists' service locations in 2021 served as the pediatric cancer care settings, data for which were scraped from 2 websites containing information about health professionals. Demographic characteristics for younger children and AYAs aged 0 to 21 years were obtained from the 2015 to 2019 American Community Survey 5-year estimates. Data were analyzed from January 1 to April 31, 2022. The main outcome was the travel time from geographic centroids of zip code tabulation areas to the nearest pediatric oncologist. The median (IQR) travel times for each demographic subgroup were estimated. Per capita pediatric oncologist supply was calculated by dividing the total number of pediatric oncologists for each state or US Census division by its population. Of the 90 498 890 children and AYAs included in the study, 63.6% were estimated to travel less than 30 minutes and 19.7% to travel between 30 and 60 minutes (for a total of 83.3%) to the nearest pediatric oncologist. Median (IQR) travel times were longest for the American Indian or Alaska Native pediatric population (46 [16-104] minutes) and residents of rural areas (95 [68-135] minutes), areas with high deprivation levels (36 [13-72] minutes), and the South (24 [13-47] minutes) and Midwest (22 [11-51] minutes) compared with the general population of children and AYAs. The pediatric oncologist supply was lowest in Wyoming (0 oncologists per 100 000 pediatric population) and highest in Washington, DC (53.3 oncologists per 100 000 pediatric population). Pediatric oncologist supply across Census divisions was lowest in the Mountain division (3.3 oncologists per 100 000 pediatric population) and highest in the New England division (8.1 oncologists per 100 000 pediatric population). Results of this study showed that most children and AYAs in the continental US had adequate access to pediatric cancer care, although disparities existed among racial and ethnic groups and residents in rural areas, areas with high deprivation levels, and some Southern and Midwestern states. Reducing these disparities may require innovative approaches, such as expanding the capabilities of local facilities and creating partnerships with adult oncology centers and primary care physicians.

BackgroundPatient navigation is increasingly being directed at adolescent and young adult (AYA) patients. This study provides a novel description of differences in AYA cancer patients’ preferences for navigation services by developmental age at diagnosis.MethodsEligible patients were diagnosed with cancer between ages 15 and 39 and had completed at least 1 month of treatment. Between October 2015 and January 2016, patients completed semi-structured interviews about navigation preferences. Summary statistics of demographic and cancer characteristics were generated. Differences in patient navigation preferences were examined through qualitative analyses by developmental age at diagnosis.ResultsAYAs were interviewed (adolescents 15–18 years N = 8; emerging adults 19–25 years N = 8; young adults 26–39 years N = 23). On average, participants were 4.5 years from diagnosis. All age groups were interested in face-to-face connection with a navigator and using multiple communication platforms (phone, text, email) to follow-up. Three of the most frequently cited needs were insurance, finances, and information. AYAs differed in support, healthcare, and resource preferences by developmental age; only adolescents preferred educational support. While all groups preferred financial and family support, the specific type of assistance (medical versus living expenses, partner/spouse, child, or parental assistance) varied by age group.ConclusionsAYAs with cancer have different preferences for patient navigation by developmental age at diagnosis. AYAs are not a one-size-fits-all population, and navigation programs can better assist AYAs when services are targeted to appropriate developmental ages. Future research should examine fertility and navigation preferences by time since diagnosis. While some navigation needs to span the AYA age range, other needs are specific to developmental age.

The objective of this Research-Practice Partnership was to disseminate and implement strategies to assist Community Health Centers in improving the care of rural cancer survivors in Montana. Funded by the National Cancer Institute’s Community Outreach and Engagement mechanism, this project utilized the MAP-IT (Mobilize, Assess, Plan, Implement, Track) program planning framework from Healthy People 2020. Partners included Montana’s Department of Public Health and Human Services’ Cancer Control Program, Montana Primary Care Association, One Health Community Health Center, and Huntsman Cancer Institute at the University of Utah. Project activities focused on (1) Planning, creating, implementing, and evaluating provider/care team education sessions through the Project ECHO tele-mentoring platform and through short webinars and (2) Building processes for identifying, documenting, and connecting with survivors using electronic health records (EHRs) and other resources. Lessons learned from this project include the value of aligning partner goals from the outset to foster sustained commitment, the importance of adapting implementation plans to address challenges and leverage opportunities, and the need for accurate EHR data and formal processes for identifying and engaging with cancer survivors.

BackgroundSurvivors of childhood and adolescent cancer experience low human papillomavirus (HPV) vaccination rates—a crucial form of cancer prevention. Oncology provider recommendations may increase young survivors HPV vaccine intent, but HPV vaccination is not typically provided in the oncology setting. Thus, we explored the implementation barriers of providing the HPV vaccine in oncology.MethodsWe interviewed oncology providers in a variety of specialty areas about their perceptions of the HPV vaccine and to explore barriers to recommending and administering the vaccine in their clinics. Interviews were audio recorded, quality checked, and thematically analyzed. Emergent themes were then mapped onto the Capability, Opportunity, Motivation, and Behavior (COM-B) Model and the Theoretical Domains Framework.ResultsA total of N=24 oncology providers were interviewed. Most provided direct clinical care (87.5%) and most commonly specialized in pediatric oncology (20.8%), medical oncology (16.7%), bone marrow transplant (16.7%), and nurse coordination (16.7%). Two themes emerged within each COM-B domain. Capability: 1) educational barriers to HPV vaccination and 2) complicated post treatment HPV vaccination guidelines. Motivation: 1) perceived importance of HPV vaccine and 2) concern about blurred scope of practice. Opportunity: 1) hospital administration and time concern barriers and 2) clinical workflow integration concerns.ConclusionImplementing HPV vaccination in the oncology setting has the potential to increase HPV vaccination rates among young survivors. Multi-level barriers to providing the HPV vaccine in the oncology setting were identified by participants. Leveraging existing implementation strategies may be an effective way to mitigate provider identified barriers and increase vaccination rates.

Cancer disparities in rural and frontier communities are an important issue in Utah because much of Utah is sparsely populated. The aims of this study were to investigate whether there are differences in the cancer incidence and 5‐year survival rates in Utah by metropolitan/rural residence and to investigate disparities in distributions of cancer risk factors. We used cancer registry records to identify patients diagnosed with a first primary cancer in Utah between 2004 and 2008. We estimated 5‐year survival and incidence rates. The Cox proportional hazards model was used to estimate hazard ratios (HRs) for the risk of death. There were 32,498 (86.9%) patients with cancer who lived in metropolitan counties and 4906 (13.1%) patients with cancer who lived in rural counties at the time of cancer diagnosis. Patients with cancer from rural counties were more likely to be older, American Indian/Alaskan Native, non‐Hispanic, male, and diagnosed at higher stage. Rural residents had a five‐year relative survival that was 5.2% lower than metropolitan residents and a 10% increase in risk of death (HR = 1.10, 95% CI = 1.03, 1.18) after adjustment for multiple factors. Overall, the cancer incidence rates in rural counties were lower by 11.9 per 100,000 per year (449.2 in rural counties vs. 461.1 in metropolitan counties). Cancer patients living in rural counties of Utah had different demographic characteristics as well as differences in incidence and survival rates. Further studies with individual‐level data are necessary to investigate the reasons behind these differences in cancer incidence and survival to reduce disparities. Cancer disparities in rural and frontier communities are an important issue in Utah because much of Utah is sparsely populated. Patients with cancer from rural counties in Utah were more likely to be older, American Indian/Alaskan Native, non‐Hispanic, male, and diagnosed at higher stage. Rural residents had a five‐year relative survival that was 5.2% lower than metropolitan residents and a 10% increase in risk of death (HR = 1.10, 95% CI = 1.03, 1.18) after adjustment for multiple factors.

Background Vaccinations are a vital part of routine childhood and adolescent preventive care. We sought to identify current oncology provider practices, barriers, and attitudes towards vaccinating childhood and adolescent cancer patients and survivors. Methods We conducted a one-time online survey distributed from March-October 2018 to pediatric oncologists at nine institutions across the United States ( N  = 111, 68.8% participation rate). The survey included 32 items about vaccination practices, barriers to post-treatment vaccination, availability of vaccinations in oncology clinic, familiarity with vaccine guidelines, and attitudes toward vaccination responsibilities. Descriptive statistics were calculated in STATA 14.2. Results Participants were 54.0% female and 82.9% white, with 12.6% specializing in Bone Marrow Transplants. Influenza was the most commonly resumed vaccine after treatment (7030%). About 50%-60% were familiar with vaccine guidelines for immunocompromised patients. More than half (62.7%) recommended that patients restart most immunizations 6 months to 1 year after chemotherapy. Common barriers to providers recommending vaccinations included not having previous vaccine records for patients (56.8%) or lacking time to ascertain which vaccines are needed (32.4%). Of participants, 66.7% stated that vaccination should be managed by primary care providers, but with guidance from oncologists. Conclusions Many pediatric oncologists report being unfamiliar with vaccine guidelines for immunocompromised patients and almost all report barriers in supporting patients regarding vaccines after cancer treatment. Our findings show that further research and interventions are needed to help bridge oncology care and primary care regarding immunizations after treatment.