A Patient-Centered Conceptual Model of AYA Cancer Survivorship Care Informed by a Qualitative Interview Study.

Purpose: Conceptual models provide frameworks to illustrate relationships among patient-, provider-, system-, and community-level factors that inform care delivery and research. Existing models of cancer survivorship care focus largely on pediatric or adult populations whose needs differ from adolescents and young adults (AYAs). We developed a patient-centered conceptual model of AYA survivorship care. Methods: We conducted a narrative literature review of current conceptual and theoretical models of care. We engaged AYA cancer survivors (n = 25) in semi-structured one-hour telephone interviews. Most participants were in their 20s and 30s, and the majority (84%) were women. Recruitment was stratified by age and time since cancer diagnosis. We conducted a thematic analysis of interview transcripts to identify themes that exemplified patient-centered care. Results: Most participants identified as white and female. Leukemia and breast cancer were the most common cancer types. Main themes included the need for (1) care coordination, (2) ongoing mental health support, (3) connection to AYA peer support, (4) support during fertility preservation efforts, (5) support with financial burden, (6) support for quality of life, (7) information about and support with side effects and late effects, and (8) attention to the unique needs of young adults. Conclusions: We present a patient-centered conceptual model of AYA survivorship care needs that can inform future cancer care delivery and research.

Association Between Medicaid Coverage Continuity and Survival in Patients With Newly Diagnosed Pediatric and Adolescent Cancers.

PURPOSE: Many patients with cancer do not gain Medicaid coverage until a cancer diagnosis, which can reduce access to early cancer detection and timely treatment, potentially driving inferior survival. Little is known about whether continuous Medicaid coverage prediagnosis through postdiagnosis (v gaining Medicaid at/after diagnosis) provides survival benefits for pediatric/adolescent oncology patients. MATERIALS AND METHODS: We identified patients newly diagnosed with cancer at age 21 years or younger in a large pediatric health system between 2007 and 2016. Electronic medical records (EMRs) were linked to Medicaid administrative data to differentiate insurance continuity patterns during the 6 months preceding through the 6 months after cancer diagnosis (assessment window): continuous Medicaid, newly gained Medicaid (at or after diagnosis), and other Medicaid enrollment patterns. For patients not linked to Medicaid data, we used EMR-reported insurance types at diagnosis. We followed patients from 6 months postdiagnosis up to 5 years, death, or December 2020, whichever came first. Multivariable regressions estimated all-cause and cancer-specific survival, controlling for sociodemographic and cancer-related factors. RESULTS: Among 1,800 patients included in the analysis, 1,293 (71.8%) had some Medicaid enrollment during the assessment window; among them, 47.6% had continuous Medicaid and 36.3% had newly gained Medicaid. Patients not linked with Medicaid data had private (26.9%) or other/no insurance (1.2%) at diagnosis. Compared with patients with continuous Medicaid, those with newly gained Medicaid had higher risks of all-cause death (hazard ratio [HR], 1.41 [95% CI, 1.10 to 1.81]; P = .008) and cancer-specific death (HR, 1.46 [95% CI, 1.12 to 1.90]; P = .005). CONCLUSION: Continuous Medicaid coverage throughout cancer diagnosis is associated with survival benefits for pediatric/adolescent patients. This finding has critical implications as millions of American individuals have been losing coverage since the unwinding of the Medicaid Continuous Enrollment Provision.

Development of a Health Insurance Navigation Program for Long-Term Childhood Cancer Survivors.

Adapting interventions to new contexts requires consideration of the needs, norms, and delivery structures of the new setting. We describe how we followed the ORBIT model of intervention development to create Health Insurance Navigation Tools (HINT), a health insurance patient navigation intervention for childhood cancer survivors. By engaging stakeholders and leveraging institutional resources, we identified and preemptively addressed real-world barriers, which may improve the feasibility and efficacy of the intervention. Using evidence-based implementation science models to adapt and refine interventions enhances rigor and reproducibility, implements checks and balances, and surmounts challenges of intervention rollout to accelerate the delivery of health insurance education to childhood cancer survivors.

Material, Psychological, and Behavioral Financial Hardship Among Lesbian, Gay, and Bisexual Cancer Survivors in the United States.

PURPOSE: Driven by anti-LGBTQ+ stigma, emerging literature suggests that lesbian, gay, and bisexual (LGB) cancer survivors experience financial hardship (FH) more frequently than heterosexual survivors. However, few studies have used nationally representative samples to estimate this inequity. METHODS: National Health Interview Survey data from 2019 to 2022 were pooled and weighted. Outcomes included material, psychological, and behavioral FH. The behavioral domain was further broken down into subdomains including medical care, prescription medications, and mental health care. Multivariable logit models controlling for a variety of factors were used to generate LGB and heterosexual predicted probabilities and differential effects for each FH outcome. Stratified estimates were generated by sex and age groups. RESULTS: A total of N = 374 LGB and N = 12,757 heterosexual cancer survivors were included in this analysis. In adjusted analyses, LGB cancer survivors had significantly higher material (19%, 95% CI, 15 to 24 v 12%, 95% CI, 11 to 13; P = .004), psychological (44%, 95% CI, 38 to 51 v 37%, 95% CI, 36 to 38; P = .035), and behavioral (23%, 95% CI, 18 to 28 v 13%, 95% CI, 13 to 14; P < .0001) FH than heterosexual survivors. LGB cancer survivors also had higher medical behavioral (11%, 95% CI, 7 to 15 v 7%, 95% CI, 6 to 7; P = .030), prescription medication behavioral (14%, 95% CI, 10 to 19 v 10%, 95% CI, 9 to 10; P = .032), and mental health behavioral (9%, 95% CI, 6 to 13 v 3%, 95% CI, 3 to 4; P < .0001) FH than heterosexual survivors. Stratified estimates revealed young LGB cancer survivors had the highest probability of each outcome (material: 31%, 95% CI, 23 to 40; psychological: 58%, 95% CI, 50 to 66; behavioral: 45%, 95% CI, 36 to 53). CONCLUSION: In this nationally representative analysis, LGB cancer survivors experience substantial inequities in all FH outcomes. It is crucial that future FH interventional work should prioritize populations at the highest risk of FH, such as LGB cancer survivors.

Sociodemographic and Socioeconomic Factors Correlate with Late-Stage Pediatric Hodgkin Lymphoma and Rhabdomyosarcoma: A Report from the Children's Oncology Group Registries.

BACKGROUND: We examined the association between late-stage diagnosis and individual- and community-level sociodemographic and socioeconomic characteristics among patients with pediatric Hodgkin lymphoma and rhabdomyosarcoma (RMS). METHODS: We obtained Children's Oncology Group data from 1999 to 2021 including summary stage [local (L), regional (R), and distant (D)], tumor subtype, demographics, and ZIP Code at diagnosis. We linked ZIP Codes to county-level redlining scores (C, D = greatest redlining), the Child Opportunity Index, and measures of segregation (racial dissimilarity indices). Logistic regressions calculated odds ratios for late-stage diagnosis and by race within tumor subtype. RESULTS: In total, 5,956 patients with Hodgkin lymphoma and 2,800 patients with RMS were included. Late-stage diagnosis of Hodgkin lymphoma was correlated with Black race [ORDistant(D) vs. regional/local (R&L) = 1.38 (1.13-1.68)], being uninsured [ORD vs. R&L = 1.38 (1.09-1.75)], and subtype [nodular sclerosis vs. Other Hodgkin lymphoma: ORD vs. R&L = 1.64 (1.34-2.01), Untyped: ORD vs. R&L = 1.30 (1.04-1.63)]. Late-stage RMS was correlated with bilingual households [ORDistant/regional(D&R) vs. local(L) = 2.66 (1.03-6.91)] and tumor type [alveolar vs. embryonal ORD vs. R&L = 6.16 (5.00-7.58)]. Community-level factors associated with late-stage Hodgkin lymphoma were greater Black (OR80-100% = 1.83; 95% CI = 1.11-3.02) and Hispanic (OR60-79% = 1.30; 95% CI = 1.05-1.60) dissimilarity indices. Late-stage diagnosis for RMS was associated with more redlined census tracts within counties (OR = 1.54; 95% CI = 1.02-2.35) and low/very low Child Opportunity Index (OR = 1.21; 95% CI = 1.02-1.45). CONCLUSIONS: Novel markers of community deprivation, such as redlining and racial segregation, were correlated with cancer outcomes for children with Hodgkin lymphoma and RMS in this first disparities study using Children's Oncology Group registries. IMPACT: The interplay of multilevel risk factors provides important consideration for efforts to improve early detection of pediatric cancer diagnosis.

Physical Activity Among Utah Cancer Survivors: Analysis From a Population-Based Statewide Survey.

BACKGROUND: Regular physical activity improves cancer survivors' health-related quality of life and physical function. We estimated the proportion of Utah cancer survivors meeting U.S. Department of Health and Human Services guidelines for weekly physical activity (aerobic plus strength exercise) and identify sociodemographic, cancer, and health-related factors associated with meeting guidelines. METHODS: Survivors randomly sampled from Utah Cancer Registry records were surveyed from 2018 to 2022 to ascertain physical activity. We calculated the percent of survivors meeting guidelines and conducted logistic regression to assess predictors of meeting guidelines. Analyses were weighted to account for complex survey sample design and nonresponse and age adjusted. RESULTS: Among Utah cancer survivors, 20.7% (95% CI, 18.5%-23.2%) met guidelines for both aerobic activity and strength exercise. 22.4% reported no aerobic exercise in a typical week, and 59.4% reported no strength exercise. Survivors 75 or older were less likely to meet physical activity guidelines than those under 55 (adjusted odds ratio: 0.40; 95% CI, 0.25-0.65). Survivors with a bachelor's degree or higher were more likely to meet physical activity guidelines than those without a college degree. Individuals with poorer overall health were less likely to report sufficient physical activity. Individuals treated with both chemotherapy and radiation had decreased odds of meeting guidelines compared to no treatment (adjusted odds ratio: 0.54; 95% CI, 0.29-0.99). CONCLUSIONS: Most Utah cancer survivors, and particularly those who received multiple modes of adjuvant treatment, are not participating in sufficient physical activity to improve longevity and quality of life after cancer.

Chronic Health Conditions and Longitudinal Employment in Survivors of Childhood Cancer.

Importance: Employment is an important factor in quality of life and provides social and economic support. Longitudinal data on employment and associations with chronic health conditions for adult survivors of childhood cancer are lacking. Objective: To evaluate longitudinal trends in employment among survivors of childhood cancer. Design, Setting, and Participants: Retrospective cohort study of 5-year cancer survivors diagnosed at age 20 years or younger between 1970 and 1986 enrolled in the multi-institutional Childhood Cancer Survivor Study (CCSS). Sex-stratified employment status at baseline (2002 to 2004) and follow-up (2014 to 2016) was compared with general population rates from the Behavioral Risk Factor Surveillance System cohort. Data were analyzed from July 2021 to June 2022. Exposures: Cancer therapy and preexisting and newly developed chronic health conditions. Main Outcomes and Measures: Standardized prevalence ratios of employment (full-time or part-time, health-related unemployment, unemployed, not in labor force) among adult (aged ≥25 years) survivors between baseline and follow-up compared with the general population. Longitudinal assessment of negative employment transitions (full-time to part-time or unemployed at follow-up). Results: Female participants (3076 participants at baseline; 2852 at follow-up) were a median (range) age of 33 (25-53) years at baseline and 42 (27-65) years at follow-up; male participants (3196 participants at baseline; 2557 at follow-up) were 33 (25-54) and 43 (28-64) years, respectively. The prevalence of full-time or part-time employment at baseline and follow-up was 2215 of 3076 (71.3%) and 1933 of 2852 (64.8%) for female participants and 2753 of 3196 (85.3%) and 2079 of 2557 (77.3%) for male participants, respectively, with declining standardized prevalence ratios over time (female participant baseline, 1.01; 95% CI, 0.98-1.03; follow-up, 0.94; 95% CI, 0.90-0.98; P < .001; male participant baseline, 0.96; 95% CI, 0.94-0.97; follow-up, 0.92; 95% CI, 0.89-0.95; P = .02). While the prevalence of health-related unemployment increased (female participants, 11.6% to 17.2%; male participants, 8.1% to 17.1%), the standardized prevalence ratio remained higher than the general population and declined over time (female participant baseline, 3.78; 95% CI, 3.37-4.23; follow-up, 2.23; 95% CI, 1.97-2.51; P < .001; male participant baseline, 3.12; 95% CI, 2.71-3.60; follow-up, 2.61; 95% CI, 2.24-3.03; P = .002). Among survivors employed full-time at baseline (1488 female participants; 1933 male participants), 285 female participants (19.2%) and 248 male participants (12.8%) experienced a negative employment transition (median [range] follow-up, 11.5 [9.4-13.8] years). Higher numbers and grades of chronic health conditions were significantly associated with these transitions. Conclusions and Relevance: In this retrospective analysis of adult survivors of childhood cancer, significant declines in employment and increases in health-related unemployment among cancer survivors compared with the general population were identified. A substantial portion of survivors in the midcareer age range fell out of the workforce. Awareness among clinicians, caregivers, and employers may facilitate clinical counseling and occupational provisions for supportive work accommodations.

Health insurance among survivors of childhood cancer following Affordable Care Act implementation.

BACKGROUND: The Affordable Care Act (ACA) increased private nonemployer health insurance options, expanded Medicaid eligibility, and provided preexisting health condition protections. We evaluated insurance coverage among long-term adult survivors of childhood cancer pre- and post-ACA implementation. METHODS: Using the multicenter Childhood Cancer Survivor Study, we included participants from 2 cross-sectional surveys: pre-ACA (2007-2009; survivors: n = 7505; siblings: n = 2175) and post-ACA (2017-2019; survivors: n = 4030; siblings: n = 987). A subset completed both surveys (1840 survivors; 646 siblings). Multivariable regression models compared post-ACA insurance coverage and type (private, public, uninsured) between survivors and siblings and identified associated demographic and clinical factors. Multinomial models compared gaining and losing insurance vs staying the same among survivors and siblings who participated in both surveys. RESULTS: The proportion with insurance was higher post-ACA (survivors pre-ACA 89.1% to post-ACA 92.0% [+2.9%]; siblings pre-ACA 90.9% to post-ACA 95.3% [+4.4%]). Post-ACA insurance increase in coverage was higher among those aged 18-25 years (survivors: +15.8% vs +2.3% or less ages 26 years and older; siblings +17.8% vs +4.2% or less ages 26 years and older). Survivors were more likely to have public insurance than siblings post-ACA (18.4% vs 6.9%; odds ratio [OR] = 1.7, 95% confidence interval [CI] = 1.1 to 2.6). Survivors with severe chronic conditions (OR = 4.7, 95% CI = 3.0 to 7.3) and those living in Medicaid expansion states (OR = 2.4, 95% CI = 1.7 to 3.4) had increased odds of public insurance coverage post-ACA. Among the subset completing both surveys, low- and mid-income survivors (<$40 000 and <$60 000, respectively) experienced insurance losses and gains in reference to highest household income survivors (≥$100 000), relative to odds of keeping the same insurance status. CONCLUSIONS: Post-ACA, more childhood cancer survivors and siblings had health insurance, although disparities remain in coverage.

Emergency Department Use in Adolescent and Young Adult Cancer Early Survivors from 2006 to 2020.

Purpose: Understanding emergency department (ED) use in adolescent and young adult (AYA) survivors could identify gaps in AYA survivorship. Methods: We conducted a cohort study of 7925 AYA survivors (aged 15-39 years at diagnosis) who were 2-5 years from diagnosis in 2006-2020 at Kaiser Permanente Southern California. We calculated ED utilization rates overall and by indication of the encounter (headache, cardiac issues, and suicide attempts). We estimated rate changes by survivorship year and patient factors associated with ED visit using a Poisson model. Results: Cohort was 65.4% women, 45.8% Hispanic, with mean age at diagnosis at 31.3 years. Overall, 38% of AYA survivors had ≥1 ED visit (95th percentile: 5 ED visits). Unadjusted ED rates declined from 374.2/1000 person-years (PY) in Y2 to 327.2 in Y5 (p change < 0.001). Unadjusted rates declined for headache, cardiac issues, and suicide attempts. Factors associated with increased ED use included: age 20-24 at diagnosis [relative risk (RR) = 1.30, 95% CI 1.09-1.56 vs. 35-39 years]; female (RR = 1.27, 95% CI 1.11-1.47 vs. male); non-Hispanic Black race/ethnicity (RR 1.64, 95% CI 1.38-1.95 vs. non-Hispanic white); comorbidity (RR = 1.34, 95% CI 1.16-1.55 for 1 and RR 1.80, 95% CI 1.40-2.30 for 2+ vs. none); and public insurance (RR = 1.99, 95% CI 1.70-2.32 vs. private). Compared with thyroid cancer, cancers associated with increased ED use were breast (RR = 1.45, 95% CI 1.24-1.70), cervical (RR = 2.18, 95% CI 1.76-2.71), colorectal (RR = 2.34, 95% CI 1.94-2.81), and sarcoma (RR = 1.39, 95% CI 1.03-1.88). Conclusion: ED utilization declined as time from diagnosis elapsed, but higher utilization was associated with social determinants of health and cancer types.

Financial hardship and neighborhood socioeconomic disadvantage in long-term childhood cancer survivors.

BACKGROUND: Long-term survivors of childhood cancer face elevated risk for financial hardship. We evaluate whether childhood cancer survivors live in areas of greater deprivation and the association with self-reported financial hardships. METHODS: We performed a cross-sectional analysis of data from the Childhood Cancer Survivor Study between 1970 and 1999 and self-reported financial information from 2017 to 2019. We measured neighborhood deprivation with the Area Deprivation Index (ADI) based on current zip code. Financial hardship was measured with validated surveys that captured behavioral, material and financial sacrifice, and psychological hardship. Bivariate analyses described neighborhood differences between survivors and siblings. Generalized linear models estimated effect sizes between ADI and financial hardship adjusting for clinical factors and personal socioeconomic status. RESULTS: Analysis was restricted to 3475 long-term childhood cancer survivors and 923 sibling controls. Median ages at time of evaluation was 39 years (interquartile range [IQR] = 33-46 years and 47 years (IQR = 39-59 years), respectively. Survivors resided in areas with greater deprivation (ADI ≥ 50: 38.7% survivors vs 31.8% siblings; P < .001). One quintile increases in deprivation were associated with small increases in behavioral (second quintile, P = .017) and psychological financial hardship (second quintile, P = .009; third quintile, P = .014). Lower psychological financial hardship was associated with individual factors including greater household income (≥$60 000 income, P < .001) and being single (P = .048). CONCLUSIONS: Childhood cancer survivors were more likely to live in areas with socioeconomic deprivation. Neighborhood-level disadvantage and personal socioeconomic circumstances should be evaluated when trying to assist childhood cancer survivors with financial hardships.

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.

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.

Risk factors and health behaviors associated with loneliness among cancer survivors during the COVID-19 pandemic.

Loneliness may exacerbate poor health outcomes particularly among cancer survivors during the COVID-19 pandemic. Little is known about the risk factors of loneliness among cancer survivors. We evaluated the risk factors of loneliness in the context of COVID-19 pandemic-related prevention behaviors and lifestyle/psychosocial factors among cancer survivors. Cancer survivors (n = 1471) seen at Huntsman Cancer Institute completed a survey between August-September 2020 evaluating health behaviors, medical care, and psychosocial factors including loneliness during COVID-19 pandemic. Participants were classified into two groups: 'lonely' (sometimes, usually, or always felt lonely in past month) and 'non-lonely' (never or rarely felt lonely in past month). 33% of cancer survivors reported feeling lonely in the past month. Multivariable logistic regression showed female sex, not living with a spouse/partner, poor health status, COVID-19 pandemic-associated lifestyle factors including increased alcohol consumption and marijuana/CBD oil use, and psychosocial stressors such as disruptions in daily life, less social interaction, and higher perceived stress and financial stress were associated with feeling lonely as compared to being non-lonely (all p < 0.05). A significant proportion of participants reported loneliness, which is a serious health risk among vulnerable populations, particularly cancer survivors. Modifiable risk factors such as unhealthy lifestyle behaviors and psychosocial stress were associated with loneliness. These results highlight the need to screen for unhealthy lifestyle factors and psychosocial stressors to identify cancer survivors at increased risk of loneliness and to develop effective management strategies.

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

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

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.

Access to Care for Adolescents and Young Adults With Cancer in the United States: State of the Literature.

Access to care remains a persistent challenge for adolescents and young adults (AYAs) with cancer. We review key findings in the science to date. (1) Location of care matters. There is survival benefit for AYAs treated either at a pediatric center or site with special status (eg, Children's Oncology Group, National Cancer Institute [NCI]-designated Comprehensive Cancer Center). (2) Socioeconomic status and insurance require further investigation. Medicaid expansion has had a moderate effect on AYA outcomes. The dependent care expansion benefit has come largely from improvements in coverage for younger populations whose parents have insurance, while some subgroups likely still face insurance gaps. (3) Clinical trial enrollment remains poor, but access may be improving. Numerous barriers and facilitators of clinical trial enrollment include those that are system level and patient level. NCI has established several initiatives over the past decade to improve enrollment, and newer collaboratives have recently brought together multidisciplinary US teams to increase clinical trial enrollment. (4) Effective AYA programs require provider and system flexibility and program reflection. With flexibility comes a need for metrics to assess program effectiveness in the context of the program model. Centers treating AYAs with cancer could submit a subset of metrics (appropriate to their program and/or services) to maintain their status; persistence would require an entity with staying power committed to overseeing the metrics and the system. Substantial clinical and biological advances are anticipated over the next 20 years that will benefit all patients with cancer. In parallel, it is crucial to prioritize research regarding access to health care and cancer care delivery; only with equitable access to care for AYAs can they, too, benefit from these advances.

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.

Cost and Utilization Outcomes in Huntsman at Home, a Novel Oncology Hospital at Home Program.

OBJECTIVES: In a real-world trial, we previously demonstrated that Huntsman at Home, a novel oncology hospital at home program, was associated with reduced health care utilization and costs. In this study, we sought to understand the impact of Huntsman at Home in specific patient subgroups defined by sex, age, area-level median income, Charlson Comorbidity Index, and current use of systemic anticancer therapy. DESIGN: Retrospective case-control study of the Huntsman Cancer Institute. Electronic Data Warehouse of patients enrolled in Huntsman at Home between August 2018 through October 2019 vs usual-care patients. SETTING AND PARTICIPANTS: A total of 169 patients admitted to Huntsman at Home compared with 198 usual-care patients. METHODS: Five dichotomous subgroups evaluated including sex (female vs male), age (≥65 vs <65), income (≥$78,735 vs <$78,735), Charlson Comorbidity Index (≥2 vs <2), and current systemic anticancer therapy use vs no current systemic anticancer therapy. Groups were compared with patients receiving usual care. Primary outcomes included 30-day costs, hospital length of stay, unplanned hospitalizations, and emergency room visits. RESULTS: Admission to Huntsman at Home was associated with an overall reduction across all 4 health care cost and utilization outcomes. Outcomes favoring admission to Huntsman at Home achieved statistical significance (P < .05) in at least 2 of the 4 outcomes for each subgroup studied. Of the subgroups that did not achieve statistically significant benefit from Huntsman at Home admission in some outcome categories, none of these subgroups favored usual care. CONCLUSIONS AND IMPLICATIONS: Admission to Huntsman at Home decreased utilization of unplanned health care and reduced costs across a wide spectrum of patient subgroups, suggesting overall consistent benefit from the service. Hospital at home models should be considered as a means by which the quality and efficiency of care can be maximized for patients with cancer.

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

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

Financial hardship among siblings of long-term survivors of childhood cancer: A Childhood Cancer Survivor Study report.

BACKGROUND: Siblings of children with cancer may experience adverse household economic consequences, but their financial outcomes in adulthood are unknown. METHODS: A total of 880 siblings (aged 18-64 years) of adult-aged childhood cancer survivors were surveyed to estimate the prevalence of financial hardship by three established domains (behavioral, material, and psychological). For individual financial hardship items matching the contemporaneous National Health Interview Survey or Behavioral Risk Factor Surveillance System, siblings were compared with the general population by calculating adjusted prevalence odds ratios (ORs) to sample-weighted responses. Multivariable logistic regression models examined associations between sibling characteristics and each hardship domain and between sibling hardship and survivors' cancer/treatment characteristics. RESULTS: Behavioral, material, and psychological hardship was reported by 24%, 35%, and 28%, respectively. Compared with national survey respondents, siblings were more likely to report worries about medical bills (OR, 1.14; 95% confidence interval [CI], 1.06-1.22), difficulty affording nutritious foods (OR, 1.79; 95% CI, 1.54-2.07), and forgoing needed medical care (OR, 1.38; 95% CI, 1.10-1.73), prescription medications (OR, 2.52; 95% CI, 1.99-3.20), and dental care (OR, 1.34; 95% CI, 1.15-1.57) because of cost. Sibling characteristics associated with reporting financial hardship in one or more domains included female sex, older age, chronic health conditions, lower income, not having health insurance, high out-of-pocket medical expenditures, and nonmedical/nonhome debt. No survivor cancer/treatment characteristics were associated with sibling financial hardship. CONCLUSIONS: Adult siblings of childhood cancer survivors were more likely to experience financial hardship compared with the general population. Childhood cancer may adversely affect entire households, with potentially lasting implications.