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 non-employer health insurance options, expanded Medicaid eligibility, and provided pre-existing health conditions protections. We evaluated insurance coverage among long-term adult survivors of childhood cancer pre/post-ACA implementation. METHODS: Using the multicenter Childhood Cancer Survivor Study, we included participants from two cross-sectional surveys: pre-ACA (2007-2009; survivors: N = 7,505; siblings: N = 2,175) and post-ACA (2017-2019; survivors: N = 4,030; siblings: N = 987). A subset completed both surveys (1,840 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 coverage was greater among those age 18-25 (survivors: 15.8% vs < 2.3% ages 26+; siblings +17.8% vs < 4.2% ages 26+). Survivors were more likely to have public insurance than siblings post-ACA (18.4% vs 6.9%; odds ratios [OR]=1.7, 95%CI 1.1-2.6). Survivors with severe chronic conditions (OR = 4.7, 95%CI 3.0-7.3) and those living in Medicaid expansion states (OR = 2.4, 95%CI 1.7-3.4) had increased odds of public insurance coverage post-ACA. Among the subset completing both surveys, low/mid income survivors (<$60,000) experienced both 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 & 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: Cross-sectional analysis of data from the Childhood Cancer Survivor Study (CCSS) between 1970 and 1999, and self-reported financial information from 2017-2019. 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/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 3,475 long-term childhood cancer survivors and 923 sibling controls. Median ages at time of evaluation was 39 [IQR 33,46] and 47 [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 (2nd quintile P = .017) and psychological financial hardship (2nd quintile P = .009; 3rd 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 AND RELEVANCE: Childhood cancer survivors were more likely to live in areas with socioeconomic deprivation. Both 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.

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.

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.

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.

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.

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.

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.

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.

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.

Vaccination practices of pediatric oncologists from eight states.

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.

Exploring Online Crowdfunding for Cancer-Related Costs Among LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer, Plus) Cancer Survivors: Integration of Community-Engaged and Technology-Based Methodologies.

BACKGROUND: Cancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not adequately engage populations facing inequities. OBJECTIVE: We describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding. METHODS: To center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related. RESULTS: Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8% misclassification while the SAB identified 20.7% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95% pairwise agreement, while the cancer term dictionary resulted in an 89.2% pairwise agreement. CONCLUSIONS: The classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research.

Challenges and Opportunities of Epidemiological Studies to Reduce the Burden of Cancers in Young Adults.

There are >1.9 million survivors of adolescent and young adult cancers (AYA, diagnosed at ages 15-39) living in the U.S. today. Epidemiologic studies to address the cancer burden in this group have been a relatively recent focus of the research community. In this article, we discuss approaches and data resources for cancer epidemiology and health services research in the AYA population. We consider research that uses data from cancer registries, vital records, healthcare utilization, and surveys, and the accompanying challenges and opportunities of each. To illustrate the strengths of each data source, we present example research questions or areas that are aligned with these data sources and salient to AYAs. Integrating the respective strengths of cancer registry, vital records, healthcare data, and survey-based studies sets the foundation for innovative and impactful research on AYA cancer treatment and survivorship to inform a comprehensive understanding of diverse AYA needs and experiences.

State policies regulating short-term limited duration insurance plans and cancer stage at diagnosis.

Short-term limited duration insurance plans, which proliferated following 2018 federal regulations, may not provide adequate protections for patients with suspected or newly diagnosed cancer and can destabilize insurance markets for comprehensive insurance plan enrollees. Individuals aged 18-64 years with newly diagnosed cancer from 11 states during 2016-2017 and 2019 were identified from the Surveillance, Epidemiology, and End Results program. Difference-in-differences analyses were used to compare changes in early-stage cancer diagnoses from 2016-2017 to 2019 in states that prohibited vs did not regulate short-term limited duration insurance plans. In adjusted difference-in-differences analyses, early-stage diagnoses increased 0.95 percentage points (95% confidence interval = 0.53 to 1.38, P < .001) in states that prohibited short-term limited duration insurance plans vs did not regulate short-term limited duration insurance plans. State policies resulting in unavailability of short-term limited duration insurance plans were associated with an increased percentage of early-stage diagnoses.

Research-practice partnership: supporting rural cancer survivors in Montana.

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.

Implementation barriers and considerations for recommending and administering the human papillomavirus (HPV) vaccination in oncology settings.

BACKGROUND: Survivors 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. METHODS: We 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. RESULTS: A 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. CONCLUSION: Implementing 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.