Financial burden among metastatic breast cancer patients: a qualitative inquiry of costs, financial assistance, health insurance, and financial coping behaviors.

PURPOSE: Metastatic breast cancer (MBC) patients often face substantial financial burden due to prolonged and expensive therapy. However, in-depth experiences of financial burden among MBC patients are not well understood. METHODS: Qualitative interviews were conducted to describe the experiences of financial burden for MBC patients, focusing on the drivers of financial burden, their experience using their health insurance, accessing financial assistance, and any resulting cost-coping behaviors. Interviews were transcribed and qualitatively analyzed using a descriptive phenomenological approach to thematic analysis. RESULTS: A total of n = 11 MBC patients or caregiver representatives participated in the study. MBC patients were on average 50.2 years of age (range: 28-65) and 72.7% non-Hispanic White. MBC patients were diagnosed as metastatic an average of 3.1 years (range: 1-9) before participating in the study. Qualitative analysis resulted in four themes including (1) causes of financial burden, (2) financial assistance mechanisms, (3) health insurance and financial burden, and (4) cost-coping behaviors. Both medical and non-medical costs drove financial burden among participants. All participants reported challenges navigating their health insurance and applying for financial assistance. Regardless of gaining access to assistance, financial burden persisted for nearly all patients and resulted in cost-coping behaviors. CONCLUSION: Our findings suggest that current systems for health insurance and financial assistance are complex and difficult to meet patient needs. Even when MBC patients accessed assistance, excess financial burden persisted necessitating use of financial coping-behaviors such as altering medication use, maintaining employment, and taking on debt.

LGBTQ+ cancer: priority or lip service? A qualitative content analysis of LGBTQ+ considerations in U.S. state, jurisdiction, and tribal comprehensive cancer control plans.

The National Comprehensive Cancer Control Program, a Centers for Disease Control and Prevention funded program, supports cancer coalitions across the United States (US) in efforts to prevent and control cancer including development of comprehensive cancer control (CCC) plans. CCC plans often focus health equity within their priorities, but it is unclear to what extent lesbian, gay, bisexual, transgender, queer/questioning, plus (LGBTQ+) populations are considered in CCC plans. We qualitatively examined to what extent LGBTQ+ populations were referenced in 64 U.S. state, jurisdiction, tribes, and tribal organization CCC plans. A total of 55% of CCC plans mentioned LGBTQ+ populations, however, only one in three CCC plans mentioned any kind of LGBTQ+ inequity or LGBTQ+ specific recommendations. Even fewer plans included mention of LGBTQ+ specific resources, organizations, or citations. At the same time almost three fourths of plans conflated sex and gender throughout their CCC plans. The findings of this study highlight the lack of prioritization of LGBTQ+ populations in CCC plans broadly while highlighting exemplar plans that can serve as a roadmap to more inclusive future CCC plans. Comprehensive cancer control plans can serve as a key policy and advocacy structure to promote a focus on LGBTQ+ cancer prevention and control.

Job lock among survivors of childhood cancer and their spouses post Affordable Care Act implementation: A Childhood Cancer Survivor Study brief report.

It is unknown how common job lock (i.e., staying at job to maintain health insurance) remains among childhood cancer survivors after Affordable Care Act (ACA) implementation in 2010. We examined prevalence of and factors associated with job lock using a cross-sectional survey from the Childhood Cancer Survivor Study (3503 survivors; 942 siblings). Survivor, spousal, and any survivor/spouse job lock were more frequently reported by survivors than siblings. Survivor job lock/any job lock was associated with older age, low income, severe chronic conditions, and debt/inability to pay debt. Job lock remains more common among survivors than siblings after ACA implementation.

Findings From a National Survey of Older US Adults on Patient Willingness to Use Telehealth Services: Cross-Sectional Survey.

BACKGROUND: Telehealth (telemedicine and telepharmacy) services increase access to patient services and ensure continuity of care. However, few studies have assessed factors that influence patients' willingness to use telehealth services, and we sought to investigate this. OBJECTIVE: This study aims to examine respondents' (aged between 45 and 75 years) willingness to use telehealth services (telepharmacy and telemedicine) and the correlates of the willingness to use telehealth services. METHODS: We administered a cross-sectional national survey of 1045 noninstitutionalized US adults aged between 45 and 75 years in March and April 2021. Multiple logistic regression analyses were used to identify demographic and health service use correlates of self-reported willingness to use telehealth services. RESULTS: Overall willingness to use telemedicine was high (674/1045, 64.5%). Adults aged 55 years and older were less willing to use telemedicine (aged between 55 and 64 years: odds ratio [OR] 0.61, 95% CI 0.42-0.86; aged 65 years or older: OR 0.33, 95% CI 0.22-0.49) than those younger than 55 years. Those with a regular provider (OR 1.01, 95% CI 1-1.02) and long travel times (OR 1.75, 95% CI 1.03-2.98) were more willing to use telemedicine compared to those without a regular provider and had shorter travel times, respectively. Willingness to use telemedicine services increased from 64.5% (674/1045) to 83% (867/1045) if the service was low-cost or insurance-covered, was with their existing health care provider, or was easy-to-use. Overall willingness to use telepharmacy was 76.7% (801/1045). Adults aged older than 55 years were less willing to use telepharmacy (aged between 55 and 64 years: OR 0.57, 95% CI 0.38-0.86; aged 65 years or older: OR 0.24, 95% CI 0.15-0.37) than those younger than 55 years. Those who rated pharmacy service quality higher were more willing to use telepharmacy (OR 1.06, 95% CI 1.03-1.09) than those who did not. CONCLUSIONS: Respondents were generally willing to use telehealth (telemedicine and telepharmacy) services, but the likelihood of their being willing to use telehealth decreased as they were older. For those initially unwilling (aged 55 years or older) to use telemedicine services, inexpensive or insurance-covered services were acceptable.

Colorectal cancer screening knowledge among community pharmacists: A national survey.

BACKGROUND: Colorectal cancer (CRC) screening can reduce CRC morbidity and mortality. Community pharmacies could be a viable option for delivering home-based CRC screening tests such as fecal immunochemical tests (FITs). However, little is known about community pharmacists' knowledge about CRC screening guidelines. OBJECTIVE: We assessed community pharmacists' knowledge about CRC screening to identify education and training needs for a pharmacy-based CRC screening program. METHODS: Between September 2022 and January 2023, we conducted an online national survey of community pharmacists practicing in the United States. Responders were eligible if they were currently-licensed community pharmacists and currently practiced in the United States. The survey assessed knowledge of national CRC screening guidelines, including recommended starting age, frequency of screening, different screening modalities, and follow-up care. Using multiple linear regression, we evaluated correlates of community pharmacists' level of CRC screening knowledge, defined as the total number of knowledge questions answered correctly from "0" (no questions correct) to "5" (all questions correct). RESULTS: A total of 578 eligible community pharmacists completed the survey, with a response rate of 59%. Most community pharmacists correctly answered the question about the next steps following a positive FIT (87%) and the question about where a FIT can be done (84%). A minority of community pharmacists responded correctly to questions about the age to start screening with FIT (34%) and how often a FIT should be repeated (28%). Only 5% of pharmacists answered all knowledge questions correctly. Community pharmacists answered more CRC screening knowledge questions correctly as their years in practice increased. Board-certified community pharmacists answered more CRC screening knowledge questions correctly compared to those who were not board-certified. CONCLUSION: To ensure the successful implementation of a pharmacy-based CRC screening program, community pharmacists need to be educated about CRC screening and trained to ensure comprehensive patient counseling and preventive service delivery.

Patient preferences for the design of a pharmacy-based colorectal cancer screening program.

PURPOSE: To assess preferences for design of a pharmacy-based colorectal cancer (CRC) screening program (PharmFIT™) among screening-eligible adults in the United States (US) and explore the impact of rurality on pharmacy use patterns (e.g., pharmacy type, prescription pick-up preference, service quality rating). METHODS: We conducted a national online survey of non-institutionalized US adults through panels managed by Qualtrics, a survey research company. A total of 1,045 adults (response rate 62%) completed the survey between March and April 2021. Sampling quotas matched respondents to the 2010 US Census and oversampled rural residents. We assessed pharmacy use patterns by rurality and design preferences for learning about PharmFIT™; receiving a FIT kit from a pharmacy; and completing and returning the FIT kit. RESULTS: Pharmacy use patterns varied, with some notable differences across rurality. Rural respondents used local, independently owned pharmacies more than non-rural respondents (20.4%, 6.3%, p < 0.001) and rated pharmacy service quality higher than non-rural respondents. Non-rural respondents preferred digital communication to learn about PharmFIT™ (36% vs 47%; p < 0.001) as well as digital FIT counseling (41% vs 49%; p = 0.02) more frequently than rural participants. Preferences for receiving and returning FITs were associated with pharmacy use patterns: respondents who pick up prescriptions in-person preferred to get their FIT (OR 7.7; 5.3-11.2) and return it in-person at the pharmacy (OR 1.7; 1.1-2.4). CONCLUSION: Pharmacies are highly accessible and could be useful for expanding access to CRC screening services. Local context and pharmacy use patterns should be considered in the design and implementation of PharmFIT™.

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.

Equitable implementation of lung cancer screening: avoiding its potential to mirror existing inequities among people who use tobacco.

PURPOSE: Lung cancer is the leading cause of cancer death, but the advent of lung cancer screening using low-dose computed tomography offers a tremendous opportunity to improve lung cancer outcomes. Unfortunately, implementation of lung cancer screening has been hampered by substantial barriers and remains suboptimal. Specifically, the commentary emphasizes the intersectionality of smoking history and several important sociodemographic characteristics and identities that should inform lung cancer screening outreach and engagement efforts, including socioeconomic considerations (e.g., health insurance status), racial and ethnic identity, LGBTQ + identity, mental health history, military experience/veteran status, and geographic residence in addressing specific community risk factors and future interventions in efforts to make strides toward equitable lung cancer screening. METHODS: Members of the Equitable Implementation of Lung Cancer Screening Interest Group with the Cancer Prevention and Control Network (CPCRN) provide a critical commentary based on existing literature regarding smoking trends in the US and lung cancer screening uptake to propose opportunities to enhance implementation and support equitable distribution of the benefits of lung cancer screening. CONCLUSION: The present commentary utilizes information about historical trends in tobacco use to highlight opportunities for targeted outreach efforts to engage communities at high risk with information about the lung cancer screening opportunity. Future efforts toward equitable implementation of lung cancer screening should focus on multi-level implementation strategies that engage and work in concert with community partners to co-create approaches that leverage strengths and reduce barriers within specific communities to achieve the potential of lung cancer screening.

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.

Financial burden and recommended multilevel solutions among caregivers of pediatric hematopoietic stem cell transplant recipients.

BACKGROUND: The healthcare costs of patients who receive hematopoietic stem cell transplantation (HSCT) are substantial. At the same time, the increasing use of pediatric HSCT leaves more caregivers of pediatric HSCT recipients at risk for financial burden-an understudied area of research. METHODS: Financial burden experienced by caregivers of recipients who received autologous or allogeneic transplants was assessed using an explanatory mixed-methods design including a one-time survey and semi-structured interviews. Financial burden was assessed through an adapted COmprehensive Score for financial Toxicity (COST) as well as questions about the types of out-of-pocket costs and cost-coping behaviors. Chi-squared or Fisher's exact tests were used to assess differences in costs incurred and coping behaviors by financial toxicity and financial toxicity by demographic factors. Interviews were audio recorded, transcribed, and analyzed using directed content analysis. RESULTS: Of 99 survey participants, 64% experienced high financial toxicity (COST  ≤ $ \le \;$ 22). Caregivers with high financial toxicity were more likely to report costs related to transportation and diet. High financial toxicity was associated with nearly all cost-coping behaviors (e.g., borrowed money). High financial toxicity was also associated with increased use of hospital financial support and transportation assistance. Qualitative analysis resulted in four categories that were integrated with quantitative findings: (1) care-related out-of-pocket costs incurred, (2) cost-coping behaviors, (3) financial support resources used, and (4) multilevel recommendations for reducing financial burden. CONCLUSIONS: Considering the substantial, long-term financial burden among pediatric HSCT patients and their caregivers, this population would benefit from adapted and tailored financial burden interventions.

Inequities Among Cancer Caregivers with Diverse Identities: A Review of the Literature and Future Directions.

PURPOSE OF REVIEW: The number of older adults with cancer relying on support from caregivers continues to increase. Health disparities in older adults with cancer often extend to their caregivers. This review aims to assess the state of cancer caregiving research in historically underrepresented diverse populations and provide recommendations for future research and policy. RECENT FINDINGS: Research on caregivers of older adults with cancer from diverse backgrounds has primarily been descriptive. Health disparities for historically underrepresented caregivers (LGBTQ + , BIPOC, rural, young adults, youth) exist across several dimensions (e.g., financial, mental, and physical health, and access to caregiver support). Few published studies have closely examined the unique experiences of these caregivers nor provided culturally appropriate tailored interventions. Health equity research within caregiving populations is in its infancy. Priorities for future work should focus on identifying modifiable targets for intervention, changing systems-level processes in acknowledging and supporting caregivers, and creating policies that reduce financial inequities of caregiving.

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.

Primary care provider perspectives on the role of community pharmacy in colorectal cancer screening: a qualitative study.

BACKGROUND: The United States Preventive Services Task Force (USPSTF) lists 32 grade A or B recommended preventive services for non-pregnant United States (US) adults, including colorectal cancer screening (CRC). Little guidance is given on how to implement these services with consistency and fidelity in primary care. Given limited patient visit time and competing demands, primary care providers (PCPs) tend to prioritize a small subset of these recommendations. Completion rates of some of these services, including CRC screening, are suboptimal. Expanding delivery of preventive services to other healthcare providers, where possible, can improve access and uptake, particularly in medically underserved areas or populations. Fecal immunochemical testing (FIT) (at-home, stool-based testing) for CRC screening can be distributed and resulted without PCP involvement. Pharmacists have long delivered preventive services (e.g., influenza vaccination) and may be a good option for expanding CRC screening delivery using FIT, but it is not clear how PCPs would perceive this expansion. METHODS: We used semi-structured interviews with PCPs in North Carolina and Washington state to assess perceptions and recommendations for a potential pharmacy-based FIT distribution program (PharmFIT™). Transcripts were coded and analyzed using a hybrid inductive-deductive content analysis guided by the Consolidated Framework for Implementation Research (CFIR) to elucidate potential multi-level facilitators of and barriers to implementation of PharmFIT™. RESULTS: We completed 30 interviews with PCPs in North Carolina (N = 12) and Washington state (N = 18). PCPs in both states were largely accepting of PharmFIT™, with several important considerations. First, PCPs felt that pharmacists should receive appropriate training for identifying patients eligible and due for FIT screening. Second, a clear understanding of responsibility for tracking tests, communication, and, particularly, follow-up of positive test results should be established and followed. Finally, clear electronic workflows should be established for relay of test result information between the pharmacy and the primary care clinic. CONCLUSION: If the conditions are met regarding pharmacist training, follow-up for positive FITs, and transfer of documentation, PCPs are likely to support PharmFIT™ as a way for their patients to obtain and complete CRC screening using FIT.

Patient-reported discrimination among limited-resourced cancer survivors: a brief report.

PURPOSE: Healthcare discrimination has been associated with health disparities including lower cancer screenings, higher medical mistrust, and strained patient-provider relationships. Our study sought to understand patient-reported discrimination among cancer survivors with limited resources living in the United States. DESIGN AND METHODS: We used cross-sectional survey data distributed by the Patient Advocate Foundation (PAF) in 12/2020 and 07/2021. Respondents reported source and reason of healthcare discrimination. Age, sex, race and ethnicity, annual household income, Rural-Urban Commuting Area (RUCA), Area Deprivation Index (ADI), employment status, cancer type, and number of comorbidities were independent variables of interest. The association between these variables and patient-reported healthcare discrimination was estimated using risk ratios (RRs) and 95% confidence intervals (CIs) from a multivariable modified Poisson regression model with robust standard errors. FINDINGS: A total of 587 cancer survivors were included in our analysis. Most respondents were female (72%) and aged ≥56 (62%); while 33% were Black, Indigenous, or Person of Color. Overall, 23% reported receipt of discrimination, with the majority reporting doctor, nurse, or healthcare provider as the source (58%). Most common reasons for discrimination included disease status (42%), income/ability to pay (36%), and race and ethnicity (17%). In the adjusted model, retired survivors were 62% less likely to report discrimination compared to those employed (RR 0.38; 95% CI 0.23-0.64). Additionally, survivors with ≥3 comorbidities were 86% more likely to report discrimination compared to those survivors with no non-cancer comorbidities (RR 1.86; 95% CI 1.26-2.72). IMPLICATIONS: Cancer survivors with limited resources reported substantial discrimination most often from a healthcare provider and most commonly for disease status and income. Discrimination should be mitigated to provide equitable and high-quality cancer care.

Drivers of COVID-19 Vaccine Intent Among Survivors of Adolescent and Young Adult Cancer: a Mixed Method Study.

BACKGROUND: Survivors of adolescent and young adult (AYA) cancer are susceptible to severe COVID-19 outcomes due to their cancer history. Drivers of COVID-19 vaccine hesitancy and willingness are largely unexplored among AYA cancer survivors. METHODS: We surveyed survivors of AYA cancer from October 2020-February 2021 who received services through an AYA cancer care program. Survey measures included vaccine hesitancy on a five-point Likert scale and an open-ended question on vaccine intent. Open-ended responses were content analyzed through two cycles of structured coding. Quantitative vaccine intent and qualitative drivers of intent were integrated during data analysis. RESULTS: Of participants who responded to the open-ended vaccine intent question (N = 300), 39.0% reported COVID-19 vaccine hesitancy. Qualitative content analysis resulted in N = 517 codes and seven content categories. The most common content category associated with hesitancy included COVID-19 vaccine development, approval, and efficacy (34.5%; p value ≤ 0.001), as well as content areas including presence of misinformation about COVID-19 in the response (4.8%; p value = 0.04), the desire for more information about COVID-19/COVID-19 vaccine (6.0%; p value ≤ 0.001), and reference to political influence on participants' intent to get the vaccine (2.5%; p value = 0.005). The most common category associated with vaccine willingness was personal perceptions of COVID-19 vaccination including protecting oneself and others (36.6% of codes; p value ≤ 0.001), followed by pro-vaccine beliefs (8.3%; p value ≤ 0.001) and trust in science (3.9%; p value ≤ 0.001). CONCLUSIONS: Common drivers of COVID-19 vaccine hesitancy among survivors of AYA cancer include concern about vaccine side effects and approval process, and misinformation. Cancer survivors COVID-19 vaccine uptake could be improved by focusing communication on drivers of willingness, motivational interviewing, and physician recommendations.

A qualitative study of barriers and facilitators to adolescents and young adults' participation in cancer clinical trials: Oncologist and patient perspectives.

BACKGROUND: Despite efforts to increase participation of adolescents and young adults (AYAs; 15-39 years) in cancer clinical trials (CTs), enrollment remains very low. Even when provided access to CTs, AYAs are less likely to participate than children and older adults. A better understanding of oncologist- and AYA survivor-reported barriers, facilitators, and potential areas for CT enrollment improvement is needed. PROCEDURES: From December 2019 to August 2020, we conducted 43 semi-structured interviews with oncologists (n = 17) and AYA cancer survivors (n = 26) who were offered and/or participated in CTs at cancer centers in California and Utah. Thematic analyses were used to interpret the findings. RESULTS: Oncologists identified a lack of available CTs, strict eligibility criteria, lack of awareness of open CTs, and poor communication between pediatric and adult oncologists as major barriers to enrollment. AYA cancer survivors identified financial and psychosocial barriers, and a poor understanding of what a CT means and its potential benefits as barriers to enrollment. Areas for improvement identified by oncologists and AYAs include educational, financial, and psychosocial support to AYAs. Oncologists also emphasized the need to increase CT availability, improve awareness of open CTs, and better communication between both pediatric and adult oncologists and oncologists and AYAs. CONCLUSIONS: For AYAs with cancer, a lack of CT eligibility and physician awareness of open CTs likely factor into their lower CT enrollment. Potential strategies to improve AYA enrollment in CTs require comprehensive collaboration between pediatric and adult institutions, as well as educational, psychosocial, and financial support to AYAs.

"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.

Cancer content and social media platform influence young adult cancer caregivers' social support on social media.

PURPOSE: To determine how social media platform and cancer content is associated with the presence of social support in responses to young adult cancer caregivers' (YACC) posts. DESIGN: We retrospectively collected YACC's Facebook and/or Instagram posts and all responses from the first six months of caregiving. SAMPLE: Eligible YACC were 18-39, caring for a cancer patient diagnosed 6 months-5 years prior, spoke English, and used social media weekly. METHODS: Social media posts and responses were manually coded for five social support types, then transformed to depict the proportion of responses per post representing each type of support. Using mixed-effects models, we compared the distributions of responses with social support types by platform (Facebook vs. Instagram) and cancer content (no vs. yes). FINDINGS: More responses contained emotional support on Instagram than Facebook (B = 0.25, Standard Error (SE)=0.09, p = 0.007). More responses with cancer content contained -validation support (B = 0.20, SE = 0.07, p = 0.002), but fewer contained emotional (B=-0.17, SE = 0.07, p = 0.02) and instrumental support (B=-0.06, SE = 0.02, p = 0.001) than posts without cancer content. CONCLUSIONS: Studying the responsiveness of social media followers by platform and cancer content provides a foundation for intervention development. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Emphasizing the suitability of different social media platforms for particular support seeking behaviors is essential.

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.

Young adult cancer caregivers' exposure to cancer misinformation on social media.

BACKGROUND: The objective of this study was to describe young adult cancer caregivers' exposure to cancer misinformation on social media. METHODS: Eligible participants were 18 to 39 years old, used social media weekly, and cared for an adult patient with cancer diagnosed 6 months to 5 years before (N = 21). Recruitment occurred from August 2017 to June 2018 in person at oncology clinics and online. Semistructured telephone interviews were recorded and analyzed with grounded theory methods through 2 rounds of coding (κ = 0.88). RESULTS: Caregivers were on average 29.1 years old, female (76.2%), non-Hispanic White (90.5%), college educated (57.1%), and caring for a spouse/partner (47.6%). Caregivers were exposed to a variety of cancer misinformation topics; some felt uncertain in their caregiving ability when confronted with cancer misinformation. Caregivers crosschecked online sources and consulted trusted individuals (eg, family, friends, and health care providers) to determine the quality of cancer-related information and manage cancer misinformation. CONCLUSIONS: Cancer misinformation on social media may influence caregiving behaviors and decision making. Whether caregivers correctly and consistently identify cancer misinformation on social media is unknown. Supporting digital literacy to mitigate cancer misinformation on social media may improve young cancer caregivers' access to credible cancer information. LAY SUMMARY: Cancer misinformation on social media affects young adult cancer caregivers' perceptions of their social support network. Caregivers differ in how they evaluate cancer information for quality and in how this information influences their health behaviors and caregiving decisions.