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Purpose: Previous randomized controlled trials have demonstrated benefit from remote symptom monitoring (RSM) with electronic patient-reported outcomes. However, the racial diversity of enrolled patients was low and did not reflect the real-world racial proportions for individuals with cancer., Methods: This secondary, cross-sectional analysis evaluated engagement of patients with cancer in a RSM program. Patient-reported race was grouped as Black, Other, or White. Patient address was used to map patient residence to determine rurality using Rural-Urban Commuting Area Codes and neighborhood disadvantage using Area Deprivation Index. Key outcomes included (1) being approached for RSM enrollment, (2) declining enrollment, (3) adherence with RSM via continuous completion of symptom surveys, and (4) withdrawal from RSM participation. Risk ratios (RR) and 95% CI were estimated from modified Poisson models with robust SEs., Results: Between May 2021 and May 2023, 883 patients were approached to participate, of which 56 (6%) declined RSM. Of those who enrolled in RSM, a total of 27% of patients were Black or African American and 67% were White. In adjusted models, all patient population subgroups of interest had similar likelihoods of being approached for RSM participation; however, Black or African American patients were more than 3× more likely to decline participation than White participants (RR, 3.09 [95% CI, 1.73 to 5.53]). Patients living in more disadvantaged neighborhoods were less likely to decline (RR, 0.49 [95% CI, 0.24 to 1.02]), but less likely to adhere to surveys (RR, 0.81 [95% CI, 0.68 to 0.97]). All patient populations had a similar likelihood of withdrawing., Conclusion: Black patients and individuals living in more disadvantaged neighborhoods are at risk for lower engagement in RSM. Further work is needed to identify and overcome barriers to equitable participation.

Background: The majority of patients with cancer seek care at community oncology sites; however, most clinical trials are available at National Cancer Institute (NCI)-designated sites. Although the NCI National Cancer Oncology Research Program (NCORP) was designed to address this problem, little is known about the county-level characteristics of NCORP site locations., Methods: This cross-sectional analysis determined the association between availability of NCORP or NCI sites and county-level characteristic theme percentile scores from the Center for Disease Control and Prevention's Social Vulnerability Index themes. Health Resources and Services Administration's Area Health Resource Files were used to determine contiguous counties. We estimated risk ratios and 95% confidence intervals (CIs) using modified Poisson regression models to evaluate the association between county-level characteristics and site availability within singular and singular and contiguous counties., Results: Of 3141 included counties, 14% had an NCORP, 2% had an NCI, and 1% had both sites. Among singular counties, for a standard deviation increase in the racial and ethnic theme score, there was a 22% higher likelihood of NCORP site availability (95% CI = 1.10 to 1.36); for a standard deviation increase in the socioeconomic status theme score, there was a 24% lower likelihood of NCORP site availability (95% CI = 0.67 to 0.87). Associations were of smaller magnitude when including contiguous counties. NCI sites were located in more vulnerable counties., Conclusions: NCORP sites were more often in racially diverse counties and less often in socioeconomically vulnerable counties. Research is needed to understand how clinical trial representation will increase if NCORP sites strategically increase their locations in more vulnerable counties., (© The Author(s) 2024. Published by Oxford University Press.)

Background: Though financial hardship is a well-documented adverse effect of standard-of-care cancer treatment, little is known about out-of-pocket costs and their impact on patients participating in cancer clinical trials. This study explored the financial effects of cancer clinical trial participation., Methods: This cross-sectional analysis used survey data collected in December 2022 and May 2023 from individuals with cancer previously served by Patient Advocate Foundation, a nonprofit organization providing social needs navigation and financial assistance to US adults with a chronic illness. Surveys included questions on cancer clinical trial participation, trial-related financial hardship, and sociodemographic data. Descriptive and bivariate analyses were conducted using Cramer's V to estimate the in-sample magnitude of association. Associations between trial-related financial hardship and sociodemographics were estimated using adjusted relative risks (aRR) and corresponding 95% confidence intervals (CI) from modified Poisson regression models with robust standard errors., Results: Of 650 survey respondents, 18% (N = 118) reported ever participating in a cancer clinical trial. Of those, 47% (n = 55) reported financial hardship as a result of their trial participation. Respondents reporting trial-related financial hardship were more often unemployed or disabled (58% vs. 43%; V = 0.15), Medicare enrolled (53% vs. 40%; V = 0.15), and traveled >1 h to their cancer provider (45% vs. 17%; V = 0.33) compared to respondents reporting no hardship. Respondents who experienced trial-related financial hardship most often reported expenses from travel (reported by 71% of respondents), medical bills (58%), dining out (40%), or housing needs (40%). Modeling results indicated that respondents traveling >1 h vs. ≤30 min to their cancer provider had a 2.2× higher risk of financial hardship, even after adjusting for respondent race, income, employment, and insurance status (aRR = 2.2, 95% CI 1.3-3.8). Most respondents (53%) reported needing $200-$1000 per month to compensate for trial-related expenses. Over half (51%) of respondents reported less willingness to participate in future clinical trials due to incurred financial hardship. Notably, of patients who did not participate in a cancer clinical trial (n = 532), 13% declined participation due to cost., Conclusion: Cancer clinical trial-related financial hardship, most often stemming from travel expenses, affected almost half of trial-enrolled patients. Interventions are needed to reduce adverse financial participation effects and potentially improve cancer clinical trial participation., (© 2024 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Background: Cancer registry-based "primary payer at diagnosis" (PPDx) data are commonly used to evaluate the effect of insurance on cancer care outcomes, yet little is known about how well they capture Medicaid or Medicare enrollment., Methods: We linked the National Cancer Institute's Surveillance, Epidemiology, and End Results registry data to monthly Centers for Medicare and Medicaid Services (CMS) Medicaid and Medicare enrollment records, state-year Medicaid policy, and managed care enrollment. We selected adults aged 19-64 years diagnosed between 2007 and 2011. We used bivariate analyses to compare PPDx to CMS enrollment at diagnosis month and assessed underreporting rates by patient characteristics and state-year policy., Results: PPDx reported 7.8% Medicare and 10.1% Medicaid, whereas CMS enrollment indicated 5.5% Medicare, 10.4% Medicaid, and 3.4% dual Medicare-Medicaid (N = 896,031). Positive predictive values for PPDx assignment to Medicaid and Medicare were 65.3% and 75.4%, with false negative rates of 52.0% and 33.8%, respectively. Medicaid underreporting was higher in low (56.5%) versus high (50.8%) poverty areas, for males (56.1%) versus females (48.9%), for Medicaid poverty expansion or waiver enrolled (63.8%) versus cash assistance-related eligibility (47.3%), and in states with large managed care enrollment (all P < 0.001). If Medicaid and Medicare enrollment data were used to edit PPDx, 12.0% of persons would switch primary payer assignment., Conclusions: Registry-reported PPDx fails to fully capture Medicaid and Medicare enrollment, which may result in biased estimates of insurance-related policy impacts. Enhancement with objective enrollment data could reduce measurement error and bias in estimates necessary to support policy assessment., Competing Interests: The authors declare no conflict of interest., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Data on financial hardship, an "adverse event" in individuals with cancer, are needed to inform policy and supportive care interventions and reduce adverse economic outcomes., Methods: Lay navigator-led financial hardship screening was piloted among University of Alabama at Birmingham oncology patients initiating treatment in October 2020. Financial hardship screening, including reported financial distress and difficulty, was added to a standard-of-care treatment planning survey. Screening feasibility and completion and proportions of reported financial distress and difficulty were calculated overall and by patient race and rurality. The risk of financial distress by patient sociodemographics was estimated., Results: Patients who completed a treatment planning survey (N=2741) were 18% Black, Indigenous, or persons of color (BIPOC) and 16% rural dwelling. The majority of patients completed financial hardship screening (90%), surpassing the target feasibility completion rate of 75%. The screening revealed 34% of patients were experiencing financial distress, including 49% of BIPOC and 30% of White patients. Adjusted models revealed BIPOC patients had a 48% higher risk of financial distress compared with those who were White (risk ratio 1.48, 95% CI, 1.31-1.66). Large differences in reported financial difficulties were seen comparing patients who were BIPOC and White (utilities: 33% vs. 10%, upfront medical payments: 44% vs. 23%, transportation: 28% vs. 12%, respectively)., Conclusions: The collection of patient-reported financial hardship data via routine clinical care was feasible and identified racial inequities at treatment initiation. Efforts to collect patient economic data should support the design, implementation, and evaluation of patient-centered interventions to improve equity and reduce the impact of financial hardship., Competing Interests: G.B.R. is supported by an American Cancer Society Mentored Research Scholar Grant (MRSG-17-051-01-PCSM) and has received research funding from Genentech, Pfizer, and Carevive and consulting fees from Genentech and Pfizer, all unrelated to this work. The remaining authors declare no conflict of interest., (Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc.)

Background: Understanding cancer survivors' health insurance decision-making is needed to improve insurance choice, potentially resulting in reduced financial hardship., Methods: This explanatory mixed methods study assessed health insurance decision-making in cancer survivors. Health Insurance Literacy Measure (HILM) captured HIL. Quantitative eye-tracking data collected from two simulated health insurance plan choice sets gauged dwell time (seconds), or interest, in benefits. Dwell time differences by HIL were estimated using adjusted linear models. Qualitative interviews explored survivors' insurance decision-making choices., Results: Cancer survivors (N = 80; 38% breast cancer) had a median age of 43 at diagnosis (IQR 34-52). When comparing traditional and high-deductible health plans, survivors were most interested in drug costs (median dwell time 58 s, IQR 34-109). When comparing health maintenance organization and preferred provider organization plans, survivors were most interested in test/imaging costs (40s, IQR 14-67). Survivors with low versus high HIL had more interest in deductible (β = 19 s, 95% CI 2-38) and hospitalization costs (β = 14 s, 95% CI 1-27) in adjusted models. Survivors with low versus high HIL more often ranked out-of-pocket (OOP) maximums and coinsurance as the most important and confusing benefits, respectively. Interviews (n = 20) revealed survivors felt alone "to do their own research" about insurance choices. OOP maximums were cited as the deciding factor since it is "how much money is going to be taken out of my pocket." Coinsurance was considered "rather than a benefit, it's a hindrance.", Conclusion: Interventions to aid in health insurance understanding and choice are needed to optimize plan choice and potentially reduce cancer-related financial hardship., (© 2023 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Background: Despite Advance Care Planning recommendations for patients with cancer, many lack Advance Directives (ADs). AD disparities persist among Black, Indigenous, or People of Color (BIPOC) patients. Based on a hypothesized correlation, we examined the association between patient-perceived cancer incurability and AD completion. Methods: This cross-sectional study obtained self-reported AD completion and incurability perception from routine care surveys. AD completion by incurability perception was estimated using modified Poisson regression. Subgroup analyses examined patients who were BIPOC, White, and had solid organ malignancies. Results: Our sample ( N  = 1209) was predominantly female (70%), White (73%) with early-stage disease (60%), and solid organ malignancies (82%). AD completion was 42%, and 40% of patients reported their cancer incurable. Patient-perceived incurability was not associated with increased AD completion (likelihood ratio 0.94, 95% confidence interval 0.78-1.13) in overall or subgroup analyses. Conclusion: Patient-perceived cancer incurability was not associated with AD completion, even accounting for race/ethnicity and cancer type.

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.

Background: Clinical trials offer novel treatments, which are essential to high quality cancer care. Patients living in rural areas are often underrepresented in clinical trials due to several factors. This study evaluated the association between rurality and interest in clinical trial participation, change in interest, and treatment decision-making style preference., Methods: This cohort study included patients with cancer receiving oncology care at the University of Alabama at Birmingham from 2017 to 2019. Associations between treatment decision-making preference and the interaction between rurality and area deprivation were analyzed using multinomial logistic regression. Initial interest in clinical trial participation and change in interest were analyzed using modified Poisson regressions with robust standard errors. Initial interest model was stratified by Area Deprivation Index (ADI; higher vs. lower disadvantaged)., Results: In adjusted models, patients in rural versus urban areas had similar initial interest in clinical trials, both those in higher (40% vs. 50%) and lower disadvantaged settings (54% vs. 62%). Additionally, rural versus urban patients had similar change of clinical trial interest for both those who changed from uninterested-to-interested (31% vs. 26%) and interested-to-uninterested (47% vs. 42%)., Conclusion: This study compares the interest in clinical trial participation among patients living in rural and urban settings. Lack of interest may be secondary to barriers that patients in rural areas face (e.g., transportation, financial, access). Most rural patients prefer a shared treatment decision-making style, which should be considered when identifying interventions to increase enrollment of underserved rural patients in clinical trials., (© 2022 American Cancer Society.)

Purpose: Cancer clinical trials can benefit current and future patients; however, Black patients, rural residents, and patients living in disadvantaged areas are often underrepresented. Using an adapted version of Unger and colleagues' model of the process of clinical trial enrollment, we evaluated the relationship between underrepresented patient populations and trial end points., Methods: This retrospective study included 512 patients with breast or ovarian cancer who were prescribed a therapeutic drug at the University of Alabama at Birmingham from January 2017 to February 2020. Patient eligibility was assessed using open clinical trials. We estimated odds ratios and 95% CIs using logistic regression models to examine the relationship between underrepresented patient populations and trial enrollment end points: eligibility, interest, offer, enrollment, and declining enrollment., Results: Of the patients in our sample, 27% were Black, 18% were rural residents, and 19% lived in higher disadvantaged neighborhoods. In adjusted models, each comparison group had similar odds of being eligible for a clinical trial. Black versus White patients had 0.40 times the odds of interest in clinical trials and 0.56 times the odds of enrollment. Patients living in areas of higher versus lower disadvantage had 0.46 times the odds of enrolling and 3.40 times the odds of declining enrollment when offered., Conclusion: Eligibility did not drive clinical trial enrollment disparities in our sample; however, retention in the clinical trial enrollment process appears to vary by group. Additional work is needed to understand how interventions can be tailored to each population's specific needs., Competing Interests: Jesse SussellEmployment: GenentechStock and Other Ownership Interests: Roche Shilpen PatelEmployment: Genentech/RocheStock and Other Ownership Interests: Genentech/RocheResearch Funding: GenentechTravel, Accommodations, Expenses: Genentech Rebecca ArendEmployment: Signatera (I)Consulting or Advisory Role: VBL Therapeutics, GlaxoSmithKline, Merck, Seagan, Sutro Biopharma, KIYATEC, Caris Life Sciences, Leap TherapeuticsResearch Funding: Champions Oncology, Exelixis, GlaxoSmithKline, Immunogen, MerckTravel, Accommodations, Expenses: Caris Life Sciences, GlaxoSmithKline, VBL Therapeutics Gabrielle B. RocqueThis author is an Associate Editor for JCO Oncology Practice. Journal policy recused the author from having any role in the peer review of this manuscript.Consulting or Advisory Role: Pfizer, Flatiron Health, Gilead SciencesResearch Funding: Carevive Systems, Genentech, PfizerTravel, Accommodations, Expenses: Gilead SciencesNo other potential conflicts of interest were reported.

Purpose: Telemedicine use during the COVID-19 pandemic among financially distressed patients with cancer, with respect to the determinants of adoption and patterns of utilization, has yet to be delineated. We sought to systematically characterize telemedicine utilization in financially distressed patients with cancer during the COVID-19 pandemic., Methods: We conducted a cross-sectional analysis of nationwide survey data assessing telemedicine use in patients with cancer during the COVID-19 pandemic collected by Patient Advocate Foundation (PAF) in December 2020. Patients were characterized as financially distressed by self-reporting limited financial resources to manage out-of-pocket costs, psychological distress, and/or adaptive coping behaviors. Primary study outcome was telemedicine utilization during the pandemic. Secondary outcomes were telemedicine utilization volume and modality preferences. Multivariable and Poisson regression analyses were used to identify factors associated with telemedicine use., Results: A convenience sample of 627 patients with cancer responded to the PAF survey. Telemedicine adoption during the pandemic was reported by 67% of patients, with most (63%) preferring video visits. Younger age (19-35 age compared to ≥ 75 age) (OR, 6.07; 95% CI, 1.47-25.1) and more comorbidities (≥ 3 comorbidities compared to cancer only) (OR, 1.79; 95% CI, 1.13-2.65) were factors associated with telemedicine adoption. Younger age (19-35 years) (incidence rate ratios [IRR], 1.78; 95% CI, 24-115%) and higher comorbidities (≥ 3) (IRR; 1.36; 95% CI, 20-55%) were factors associated with higher utilization volume. As area deprivation index increased by 10 units, the number of visits decreased by 3% (IRR 1.03, 95% CI, 1.03-1.05)., Conclusions: The rapid adoption of telemedicine may exacerbate existing inequities, particularly among vulnerable financially distressed patients with cancer. Policy-level interventions are needed for the equitable and efficient provision of this service., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Uninsured or underinsured individuals with cancer are likely to experience financial hardship, including forgoing healthcare or non-healthcare needs such as food, housing, or utilities. This study evaluates the association between health insurance coverage and financial hardship among cancer survivors during the COVID-19 pandemic. This cross-sectional analysis used Patient Advocate Foundation (PAF) survey data from May to July 2020. Cancer survivors who previously received case management or financial aid from PAF self-reported challenges paying for healthcare and non-healthcare needs during the COVID-19 pandemic. Associations between insurance coverage and payment challenges were estimated using Poisson regression with robust standard errors, which allowed for estimation of adjusted relative risks (aRR). Of 1,437 respondents, 74% had annual household incomes <$48,000. Most respondents were enrolled in Medicare (48%), 22% in employer-sponsored insurance, 13% in Medicaid, 6% in an Affordable Care Act (ACA) plan, and 3% were uninsured. Approximately 31% of respondents reported trouble paying for healthcare during the COVID-19 pandemic. Respondents who were uninsured (aRR 2.58, 95% confidence interval [CI] 1.83-3.64), enrolled in an ACA plan (aRR 1.86, 95% CI 1.28-2.72), employer-sponsored insurance (aRR 1.70, 95% CI 1.23-2.34), or Medicare (aRR 1.49, 95% CI 1.09-2.03) had higher risk of trouble paying for healthcare compared to Medicaid enrollees. Challenges paying for non-healthcare needs were reported by 57% of respondents, with 40% reporting trouble paying for food, 31% housing, 28% transportation, and 20% internet. In adjusted models, Medicare and employer-sponsored insurance enrollees were less likely to have difficulties paying for non-healthcare needs compared to Medicaid beneficiaries. Despite 97% of our cancer survivor sample being insured, 31% and 57% reported trouble paying for healthcare and non-healthcare needs during the COVID-19 pandemic, respectively. Greater attention to both medical and non-medical financial burden is needed given the economic pressures of the COVID-19 pandemic., Competing Interests: I have read the journal’s policy and the authors of this manuscript have the following competing interests: Dr. Rocque is supported by an American Cancer Society Mentored Research Scholar Grant (MRSG-17-051-01-PCSM) and has received research funding from Genentech, Pfizer, and Carevive and consulting fees for Genentech and Pfizer for work unrelated to the current study. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

Purpose: The relationship between out-of-pocket spending and cost-related medication nonadherence among older rural- and urban-dwelling cancer survivors is not well understood., Methods: This retrospective cohort study used the Surveillance, Epidemiology, and End Results Program, Medicare claims, and the Consumer Assessment of Healthcare Providers and Systems survey linked data resource linked data (2007-2015) to investigate the relationship between cancer survivors' cost responsibility in the year before and after report of delaying or not filling a prescription medication because of cost in the past 6 months (cost-related medication nonadherence). Secondary exposures and outcomes included Medicare spending and utilization. Generalized linear models assessed bidirectional relationships between cost-related medication nonadherence, spending, and utilization. Effects of residence were assessed via interaction terms., Results: Of 6,591 older cancer survivors, 13% reported cost-related medication nonadherence. Survivors were a median 8 years (interquartile range, 4.5-12.5 years) from their cancer diagnosis, 15% were dually Medicare/Medicaid-eligible, and prostate (40%) and breast (32%) cancer survivors were most prevalent. With every $500 USD increase in patient cost responsibility, risk of cost-related medication nonadherence increased by 3% (risk ratio, 1.03; 95% CI, 1.02 to 1.04). After report of cost-related medication nonadherence, patient cost responsibility was 22% higher (95% CI, 1.11 to 1.32) compared with those not reporting nonadherence, amounting to $523 USD (95% CI, $430 USD to $630 USD). Medicare spending and utilization were also higher before and after report of cost-related nonadherence versus none. For survivors residing in rural (18%) and urban (82%) areas, residence did not modify adherence or cost outcomes., Conclusion: A bidirectional relationship exists between patient cost responsibility and cost-related medication nonadherence. Interventions reducing urban- and rural-dwelling survivor health care costs and cost-related adherence barriers are needed., Competing Interests: Amy DavidoffConsulting or Advisory Role: AmgenUncompensated Relationships: Flatiron HealthUncompensated Relationships: Genentech/Roche Janet S. de MoorEmployment: Biogen (I)Stock and Other Ownership Interests: Biogen (I)Travel, Accommodations, Expenses: Biogen (I)No potential conflicts of interest were reported.

Purpose: Though lay navigation programs have proven beneficial for individuals during cancer treatment, little is known about the effects of lay navigation on health care utilization and Medicare spending among older adults during cancer survivorship., Methods: This retrospective cohort study used administrative claims data to evaluate a lay navigation program implemented from 2012 to 2015 at 12 academic and community cancer centers in the Southeast. Medicare beneficiaries age ≥65 years navigated during survivorship were compared to propensity score-matched, non-navigated cancer survivors. Quarterly trends in Medicare spending were estimated using repeated measures mixed models. Rate ratios (RRs) and 95% confidence intervals (CIs) were estimated using repeated measures generalized linear models for quarterly emergency room (ER) visits and hospitalizations., Results: Medicare spending for navigated (n = 3255) versus non-navigated older cancer survivors (n = 3255) was initially higher but declined faster by $513 per patient per quarter (95% CI -$616, -$410). Per patient per quarter risk of ER visits decreased by 11% (RR 0.89, 95% CI 0.86, 0.92) and hospitalizations decreased by 16% (RR 0.84, 95% CI 0.81, 0.88) over time comparing navigated versus non-navigated patients. Similar results were seen for patients enrolled in navigation post-treatment (N = 1893)., Conclusions: In older cancer survivors receiving care in the Deep South, patients receiving lay navigation compared to those non-navigated had significant reductions in Medicare spending, hospitalizations, and ER visits., Implications for Cancer Survivors: Though much emphasis has been placed on lay navigation during initial cancer treatment, navigation is needed throughout survivorship due to the high costs and health care utilization that persist post-treatment., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Cancer survivors are frequently unprepared to manage the out-of-pocket (OOP) costs associated with undergoing cancer treatment and the potential for employment disruption. This commentary outlines a set of research recommendations stemming from the National Cancer Institute's Future of Health Economics Research Conference to better understand and reduce patient economic burden as part of cancer care delivery. Currently, there are a lack of detailed metrics and measures of survivors' OOP costs and employment disruption, and data on these costs are rarely available at the point of care to guide patient-centered treatment and survivorship care planning. Future research should improve the collection of data about survivors' OOP costs for medical care, other cancer-related expenses, and experiences of employment disruption. Methods such as microcosting and the prospective collection of patient-reported outcomes in cancer care are needed to understand the true sum of cancer-related costs taken on by survivors and caregivers. Better metrics and measures of survivors' costs must be coupled with interventions to incorporate that information into cancer care delivery and inform meaningful communication about OOP costs and employment disruption that is tailored to different clinical situations. Informing survivors about the anticipated costs of their cancer care supports informed decision making and proactive planning to mitigate financial hardship. Additionally, system-level infrastructure should be developed and tested to facilitate screening to identify survivors at risk for financial hardship, improve communication about OOP costs and employment disruption between survivors and their health-care providers, and support the delivery of appropriate financial navigation services., (Published by Oxford University Press 2022. This work is written by (a) US Government employee(s) and is in the public domain in the US.)

Background: Depression is common in the oncology patient population. Little data exist on the impact of depression on health care utilization. Objectives: We evaluated the prevalence of depression and the relationship between depression and health care utilization in patients with cancer. Design: This cross-sectional study utilized patient-reported outcome data from predominately Medicare beneficiaries with cancer. We examined the emergency department visits and inpatient admissions within 3 months from survey. The relationship between depression and hospital visits was assessed using generalized linear models. Results: Of 1038 patients included in the study, 13% had moderate to severe depression. In adjusted models, patients with moderate or severe depression trended toward increased risk of hospitalizations compared with patients without depression (risk ratio: 1.25, 95% confidence interval: 0.97-1.62). Conclusions: Clinically significant depression is not uncommon in cancer patients. Further research is needed evaluating the relationship between depression, health care utilization, and early psychiatric intervention in oncology.

Background: Little data exist on perceptions of guideline-based care in oncology. This qualitative analysis describes patients' and oncologists' views on the value of guideline-based care as well as discussing guidelines when making metastatic breast cancer (MBC) treatment decisions., Patients and Methods: In-person interviews completed with MBC patients and community oncologists and focus groups with academic oncologists were audio-recorded and transcribed. Two coders utilized a content analysis approach to analyze transcripts independently using NVivo. Major themes and exemplary quotes were extracted., Results: Participants included 20 MBC patients, 6 community oncologists, and 5 academic oncologists. Most patients were unfamiliar with the term "guidelines." All patients desired to know if they were receiving guideline-discordant treatment but were often willing to accept this treatment. Five themes emerged explaining this including trusting the oncologist, relying on the oncologist's experiences, being informed of rationale for deviation, personalized treatment, and openness to novel therapies. Physician discussions regarding the importance of guidelines revealed three themes: consistency with scientific evidence, insurance coverage, and limiting unusual practices. Oncologists identified three major limitations in using guidelines: lack of consensus, inability to "think outside the box" to personalize treatment, and lack of guideline timeliness. Although some oncologists discussed guidelines, it was often not considered a priority., Conclusions: Patients expressed a desire to know whether they were receiving guideline-based care but were amenable to guideline-discordant treatment if the rationale was made clear. Providers' preference to limit discussions of guidelines is discordant with patients' desire for this information and may limit shared decision-making.

Background: Shared decision-making (SDM) occurs when a patient partners with their oncologist to integrate personal preferences and values into treatment decisions. A key component of SDM is the elicitation of patient preferences and values, yet little is known about how and when these are elicited, communicated, prioritized, and documented within clinical encounters., Methods: This cross-sectional study evaluated nationwide data collected by CancerCare to better understand current patterns of SDM between patients and their oncology clinicians. Patient surveys included questions about the importance of quality-of-life preferences and discussions regarding quality-of-life priorities with their clinicians. Clinician surveys included questions about the discussion of quality-of-life priorities and preferences with patients, the effect of quality-of-life priorities on treatment recommendations, and quality-of-life priority documentation in practice., Results: Patient survey completers (n = 320; 33% response rate) were predominantly women (95%), had a diagnosis of breast cancer (59%), or were receiving active cancer treatment (59%). Clinician survey completers (n = 112; 5% response rate) predominately identified as hematologists or oncologists (66%). Although 67% of clinicians reported knowing their patients' personal quality-of-life priorities and preferences before finalizing treatment plans, only 37% of patients reported that these discussions occurred before treatment initiation. Most patients (95%) considered out-of-pocket expenses important during treatment planning, yet only 59% reported discussing out-of-pocket expenses with their clinician before finalizing treatment plans. A majority of clinicians (52%) considered clinic questionnaires as feasible to document quality-of-life priorities and preferences., Conclusions: Patients and clinicians reported that preferences related to quality-of-life should be considered in treatment decision making, yet barriers to SDM, preference elicitation, and documentation remain., (© 2020 American Cancer Society.)

Objectives: The Patient Care Connect Program (PCCP), through lay navigators' distress assessments and assistance, was shown to lower healthcare utilization and costs in older cancer survivors. PCCP benefits and assistance needs for disadvantaged minorities (e.g., Black) vs. Whites are unknown., Materials and Methods: We examined the PCCP impact with retrospective analyses of Medicare claims (2012-2015). Outcomes were quarterly costs and utilization (emergency room (ER), hospitalizations) for navigated and matched survivors. Repeated measures generalized linear models with normal (costs), and Poisson (utilization) distributions assessed differences in trends overall and separately for Blacks and Whites. With distress data for navigated survivors, we assessed high distress (score > 3), ≥1 distress cause (overall, by domain), and ≥ 1 assistance request by minority group., Results: Beneficiaries were: 772 Black and 5350 White navigated, and 770 Black and 5348 White matched survivors. Impact was: i) costs: -$557.5 Blacks (p < .001), -$813.4 Whites (p < .001); ii) ER: Incidence Rate Ratio (IRR) 0.97 Blacks (NS), 0.93 Whites (p < .001); iii) hospitalizations: IRR 0.97 Blacks (NS), 0.91 Whites (p < .001). There was no significant difference in impact across minority groups. No significant differences were found in high distress (29% Black, 25.1% White), ≥1 distress cause (61.6% Black, 57.8% White), or ≥ 1 assistance request (64.5% Black, 59.1% White). Blacks were more likely to have ≥1 distress cause in the Practical domain., Conclusion: The PCCP may benefit both Black and White older cancer survivors. Programs should consider the proportion of older survivors with high distress, and the specific needs of minorities., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Background: Understanding factors that impact patient satisfaction with cancer care within the growing population of older adults living with cancer will contribute to tailoring programs that address patient needs and expectations. Further, patient satisfaction is a determinant of healthcare organizations' institutional performance. The purpose of this study was to investigate the relationship between patient satisfaction with care and health-related quality of life (HRQoL) among Medicare recipients with common cancers types (breast, prostate, or lung cancer)., Methods: Cross-sectional analysis of survey data from 637 Medicare beneficiaries (≥65 years) with breast (n = 304), lung (n = 158), or prostate cancer (n = 175) in twelve hospitals in the Southeastern United States. Participants responded eighteen satisfaction questions across five domains. HRQoL was measured with the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores of the SF-12.v2 instrument., Results: SF-12 scores were positively associated with satisfaction domain scores. The magnitude of these associations was small with covariate-adjusted effect sizes r ranging from 0.05 to 0.12. Satisfaction scores were highest within the Quality of Care domain and lowest within the Patient Engagement domain., Conclusions: Patient satisfaction domains had only modest association with HRQoL, indicating that these constructs should not be assumed to correlate. Satisfaction domains, including how patients access care, coordinate care, and engage within the healthcare system, were identified as potential areas for improvement. Patient satisfaction assessment across age groups may inform oncology care providers on ways in which their patients perceive the quality of care received, which ultimately affect healthcare organizations' accreditation, ranking, and reimbursement., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Purpose: Many community cancer clinics closed between 2008 and 2016, with additional closings potentially expected. Limited data exist on the impact of travel time on health care costs and resource use., Methods: This retrospective cohort study (2012 to 2015) evaluated travel time to cancer care site for Medicare beneficiaries age 65 years or older in the southeastern United States. The primary outcome was Medicare spending by phase of care (ie, initial, survivorship, end of life). Secondary outcomes included patient cost responsibility and resource use measured by hospitalization rates, intensive care unit admissions, and chemotherapy-related hospitalization rates. Hierarchical linear models with patients clustered within cancer care site (CCS) were used to determine the effects of travel time on average monthly phase-specific Medicare spending and patient cost responsibility., Results: Median travel time was 32 (interquartile range, 18-59) minutes for the 23,382 included Medicare beneficiaries, with 24% of patients traveling longer than 1 hour to their CCS. During the initial phase of care, Medicare spending was 14% higher and patient cost responsibility was 10% higher for patients traveling longer than 1 hour than those traveling 30 minutes or less. Hospitalization rates were 4% to 13% higher for patients traveling longer than 1 hour versus 30 minutes or less in the initial (61 v 54), survivorship (27 v 26), and end-of-life (310 v 286) phases of care (all P < .05). Most patients traveling longer than 1 hour were hospitalized at a local hospital rather than at their CCS, whereas the converse was true for patients traveling 30 minutes or less., Conclusion: As health care locations close, patients living farther from treatment sites may experience more limited access to care, and health care spending could increase for patients and Medicare.

Background: Adequate social support for older adults is necessary to maintain quality of life and reduce mortality and morbidity. However, little is known regarding the social support needs of older adults with cancer. The objective of the current study was to examine social support needs, specifically the unmet needs, among older adults with cancer., Methods: Medicare beneficiaries (those aged ≥65 years) with cancer were identified from the University of Alabama at Birmingham Health System Cancer Community Network. Social support needs were assessed using a modified version of the Medical Outcomes Study Social Support Survey. The authors defined an "unmet need" if participants reported having some/a little/never availability of support and requiring support for that need., Results: Of the 1460 participants in the current study, the average age was 74 years (standard deviation, 5.8 years). Approximately two-thirds of participants (986 participants; 67.5%) reported having at least 1 social support need, with the highest needs noted in the emotional (49.5%) and physical (47.4%) support subdomains. Of those individuals with a support need, approximately 45% had at least 1 unmet need, with the greatest percentages noted in the medical (39%) and informational (36%) subdomains. Multivariable analyses demonstrated that participants who were nonwhite, were divorced or never married, or had a high symptom burden were at greatest risk of having unmet social support needs across subdomains., Conclusions: In this population of older adults with cancer, the authors found high levels of unmet social support needs, particularly in the medical and informational support subdomains. Participants who were nonwhite, were divorced or never married, or had a high symptom burden were found to be at greatest risk of having unmet needs., (© 2018 American Cancer Society.)

Purpose: The Oncology Care Model (OCM) is a highly controversial specialty care model developed by the Centers for Medicare & Medicaid aimed to provide higher-quality care at lower cost. Because oncologists will be increasingly held accountable for spending as well as quality within new value-based health care models like the OCM, they need to understand the drivers of total spending for their patients., Methods: This retrospective cohort study included patients ≥ 65 years of age with primary fee-for-service Medicare insurance who received antineoplastic therapy at 12 cancer centers in the Southeast from 2012 to 2014. Medicare administrative claims data were used to identify health care spending during the prechemotherapy period (from cancer diagnosis to antineoplastic therapy initiation) and during the OCM episodes of care triggered by antineoplastic treatment. Total health care spending per episode includes all types of services received by a patient, including nononcology services. Spending was further characterized by type of service., Results: Average total health care spending in the three OCM episodes of care was $33,838 (n = 3,427), $23,811 (n = 1,207), and $19,241 (n = 678). Antineoplastic drugs accounted for 27%, 32%, and 36% of total health care spending in the first, second, and third episodes. Ten drugs, used by 31% of patients, contributed 61% to drug spending ($18.8 million) in the first episode. Inpatient spending also substantially contributed to total costs, representing 17% to 20% ($30.5 million) of total health care spending., Conclusion: Health care spending was heavily driven by both antineoplastic drugs and hospital use. Oncologists' ability to affect these types of spending will determine their success under alternative payment models.

Background: As the population of older adults with cancer continues to grow, the most important factors contributing to their health-related quality of life (HRQOL) remain unclear., Methods: A total of 1457 older adults (aged ≥65 years) with cancer participated in a telephone survey. Outcomes were measured using the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores of the 12-Item Short Form Survey (SF-12) from the Medical Outcomes Study (version 2). Statistical techniques used to identify factors in 4 domains (physical, psychological, social, and spiritual) most strongly associated with HRQOL included linear models, recursive partitioning, and random forests. Models were developed in a training data set (920 respondents) and performance was assessed in a validation data set (537 respondents)., Results: Respondents were a median of 19 months from diagnosis, and 28.1% were receiving active treatment. The most relevant factors found to be associated with PCS were symptom severity, comorbidity scores, leisure-time physical activity, and having physical support needs. The most relevant factors for MCS were having emotional support needs, symptom severity score, and the number of financial hardship events. Results were consistent across modeling techniques. Symptoms found to be strongly associated with PCS included fatigue (adjusted proportion of summary score's variance [R 2 ] = 0.34), pain (adjusted R 2 = 0.32), disturbed sleep (adjusted R 2 = 0.16), and drowsiness (adjusted R 2 = 0.16). Symptoms found to be strongly associated with MCS included fatigue (adjusted R 2 = 0.23), problems remembering things (adjusted R 2 = 0.17), disturbed sleep (adjusted R 2 = 0.16), and lack of appetite (adjusted R 2 = 0.16)., Conclusions: The findings of the current study support the importance of addressing persistent symptoms, managing comorbidities, promoting leisure-time physical activity, and addressing financial challenges. A long-term comprehensive approach is needed to ensure the well-being of older adults with cancer. Cancer 2018;124:596-605. © 2017 American Cancer Society., (© 2017 American Cancer Society.)

Importance: Lay navigators in the Patient Care Connect Program support patients with cancer from diagnosis through survivorship to end of life. They empower patients to engage in their health care and navigate them through the increasingly complex health care system. Navigation programs can improve access to care, enhance coordination of care, and overcome barriers to timely, high-quality health care. However, few data exist regarding the financial implications of implementing a lay navigation program., Objective: To examine the influence of lay navigation on health care spending and resource use among geriatric patients with cancer within The University of Alabama at Birmingham Health System Cancer Community Network., Design, Setting, and Participants: This observational study from January 1, 2012, through December 31, 2015, used propensity score-matched regression analysis to compare quarterly changes in the mean total Medicare costs and resource use between navigated patients and nonnavigated, matched comparison patients. The setting was The University of Alabama at Birmingham Health System Cancer Community Network, which includes 2 academic and 10 community cancer centers across Alabama, Georgia, Florida, Mississippi, and Tennessee. Participants were Medicare beneficiaries with cancer who received care at participating institutions from 2012 through 2015., Exposures: The primary exposure was contact with a patient navigator. Navigated patients were matched to nonnavigated patients on age, race, sex, cancer acuity (high vs low), comorbidity score, and preenrollment characteristics (costs, emergency department visits, hospitalizations, intensive care unit admissions, and chemotherapy in the preenrollment quarter)., Main Outcomes and Measures: Total costs to Medicare, components of cost, and resource use (emergency department visits, hospitalizations, and intensive care unit admissions)., Results: In total, 12 428 patients (mean (SD) age at cancer diagnosis, 75 (7) years; 52.0% female) were propensity score matched, including 6214 patients in the navigated group and 6214 patients in the matched nonnavigated comparison group. Compared with the matched comparison group, the mean total costs declined by $781.29 more per quarter per navigated patient (β = -781.29, SE = 45.77, P < .001), for an estimated $19 million decline per year across the network. Inpatient and outpatient costs had the largest between-group quarterly declines, at $294 and $275, respectively, per patient. Emergency department visits, hospitalizations, and intensive care unit admissions decreased by 6.0%, 7.9%, and 10.6%, respectively, per quarter in navigated patients compared with matched comparison patients (P < .001)., Conclusions and Relevance: Costs to Medicare and health care use from 2012 through 2015 declined significantly for navigated patients compared with matched comparison patients. Lay navigation programs should be expanded as health systems transition to value-based health care.

Context: Pain and fatigue are common symptoms among cancer patients and often lead to substantial distress. Innovative self-management programs for pain and fatigue are needed., Objectives: The primary objective was to assess the feasibility of a telehealth pain and fatigue self-management program among adult cancer patients. Secondary objectives included assessment of differences in patient characteristics, recruitment, and retention of patients based on two screening strategies: 1) navigator-collected, patient-reported pain or fatigue and 2) in-clinic, physician-identified pain or fatigue., Methods: This prospective, nonrandomized, pre-post evaluation assessed feasibility, which was defined as 50% of eligible patients choosing to participate and completing the intervention. Patient demographics and patient-reported outcomes (patient activation, distress, symptoms, and quality of life) were collected at baseline and study completion. Differences in baseline characteristics were compared between cohorts and for patients who did vs. did not graduate from the program., Results: The program did not meet feasibility requirements because of only 34% of eligible patients choosing to participate. However, 50% of patients starting the program graduated. Differences in baseline characteristics and retention rates were noted by recruitment strategy. At baseline, 27.3% of navigated patients were at the highest activation level compared with 7.1% in the physician-referred, non-navigated patients (P = 0.17); more than 15% of non-completers were at the lowest activation level compared with 9% of completers (P = 0.85)., Conclusion: Telehealth self-management program for pain and fatigue may be better accepted among selected segments of cancer patients. Larger scale studies are needed to assess the efficacy of this program in a more selective activated population., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)