Influence of Cost-Related Considerations on Clinical Trial Participation: Results from the 2020 Health Information National Trends Survey (HINTS).

BACKGROUND: People experiencing financial burden are underrepresented in clinical trials. OBJECTIVE: Describe the prevalence of cost-related considerations influential to trial participation and their associations with person-level characteristics. DESIGN: This cross-sectional study used and assessed how three cost-related considerations would influence the decision to participate in a hypothetical clinical trial. PARTICIPANTS: A total of 3682 US adult respondents to the Health Information National Trends Survey MAIN MEASURES: Survey-weighted multivariable logistic regression estimated associations between respondent characteristics and odds of reporting cost-related considerations as very influential to participation. KEY RESULTS: Among 3682 respondents, median age was 48 (IQR 33-61). Most were non-Hispanic White (60%), living comfortably or getting by on their income (74%), with ≥ 1 medical condition (61%). Over half (55%) of respondents reported at least one cost-related consideration as very influential to trial participation, including if usual care was not covered by insurance (reported by 42%), payment for participation (24%), or support for participation (24%). Respondents who were younger (18-34 vs. ≥ 75, adjusted odds ratio [aOR] 4.3, 95% CI 2.3-8.1), more educated (high school vs.

Understanding the characteristics of US cancer survivors with informal caregivers.

BACKGROUND: Although informal caregivers such as family and friends provide people with cancer needed physical care and emotional support, little is known about which individuals have access to such caregivers. The purpose of this article is to provide a nationally representative description of the sociodemographic characteristics of cancer survivors who have or had an informal caregiver in the United States. METHODS: Cross-sectional data were taken from the Experiences With Cancer Survivorship Supplement of the Medical Expenditure Panel Survey in 2011, 2016, and 2017. People were cancer survivors from diagnosis until the end of life. The study population consisted of adult survivors of cancer other than nonmelanoma skin cancer who were treated for cancer less than 3 years before the survey and were living in the community (n = 720). The main outcome measure was whether or not the cancer survivor reported having an informal caregiver. RESULTS: In the United States, 55.2% of cancer survivors reported having an informal caregiver during or after their cancer treatment. The relationship of the caregiver to the survivor varied by sex: males were more likely to have a spouse as their caregiver, and females were more likely to have a child as their caregiver. In multivariate analyses, cancer survivors who were female, were married, were of a race/ethnicity other than White, or were in poor health were more likely to have an informal caregiver. CONCLUSIONS: Future research can examine whether those without informal caregivers might need more formal support as they undergo cancer treatment and transition into cancer survivorship.

Information Sources Used by Oncologists to Understand Multi-marker Tumor Panel Tests for Cancer Patients.

Precision medicine using multi-marker tumor panel (MMTP) testing can help inform cancer treatment decisions. Oncologists' knowledge of these tests and their ability to find up-to-date information about their application in clinical care is essential. This study aimed to (1) describe information sources used by oncologists to learn about new genomic tests and (2) examine characteristics associated with the use of each information source. The National Cancer Institute's National Survey of Precision Medicine in Cancer Treatment surveyed a nationally representative sample of oncologists about MMTP testing. We examined the use of 11 information sources among oncologists that reported using MMTP tests (n = 1222). Bivariate analyses were used to examine whether information sources differed by oncologist- and practice-level characteristics and type of MMTP test. Most oncologists reported using peer-reviewed medical literature (88.8%), scientific conferences (87.9%), and medical professional societies (83.8%) to learn about MMTPs. In contrast, government websites, FDA inserts, and foundation resources were each used by < 36% of oncologists. The use of information sources differed by oncologist and practice characteristics. For example, a greater percentage of oncologists with an academic affiliation used peer-reviewed medical literature and scientific conferences, as compared to those without an academic affiliation (p = 0.006). As the number and type of MMTP tests increase, providing oncologists with current information about their appropriate application is essential. Further understanding of how oncologists use specific information sources may improve the dissemination and effective implementation of new MMTPs and help tailor educational interventions based on provider characteristics.

Employment trends in young women following a breast cancer diagnosis.

PURPOSE: Little is known about how a breast cancer diagnosis and treatment affects job-related outcomes in young women with breast cancer, who are an integral part of the workforce. We sought to describe employment trends among young breast cancer survivors. METHODS: 911 women with non-metastatic breast cancer were surveyed about employment-related outcomes 1 year post-diagnosis. Participants were enrolled in the Young Women's Breast Cancer Study an ongoing, multi-center cohort of women diagnosed with breast cancer at age ≤ 40. RESULTS: Among 911 women, median age at diagnosis was 36 years (range 17-40). Most women (80%, n = 729) were employed 1 year post-diagnosis. Among the 7% (n = 62) employed before diagnosis but who reported unemployment at 1 year, approximately half reported they were unemployed for health reasons. Among employed women, 7% said treatment affected their ability to perform their job. Women with stage-three disease (vs. stage 1 disease, odds ratio (OR): 3.73, 95% CI 1.39-9.97) and those who reported having money to pay bills after cutting back or difficulty paying bills at baseline (vs. having enough money for special things, OR 2.70, 95% CI 1.32-5.52) at baseline were more likely to have transitioned out of the workforce. CONCLUSIONS: Our results suggest an impact of disease burden and socioeconomic status on employment in young breast cancer survivors. There is a need to ensure young survivors who leave the workforce following diagnosis are sufficiently supported given the potential adverse psychosocial and financial impacts of unemployment on survivors, their families, communities, and society.

Annual Out-of-Pocket Expenditures and Financial Hardship Among Cancer Survivors Aged 18-64 Years - United States, 2011-2016.

In the United States in 2019, an estimated 16.9 million persons are living after receiving a cancer diagnosis (1). These cancer survivors face many challenges, including functional limitations, serious psychological distress (2), and other lasting and late effects of cancer treatments. Because of the high cost of cancer therapy, many cancer survivors are more likely to face substantial out-of-pocket health care expenditures and financial hardship, compared with persons without a history of cancer (3,4). Out-of-pocket expenditures and financial hardship associated with cancer have been higher among survivors aged 18-64 years than they have been among older survivors (5). To estimate annual out-of-pocket expenditures and financial hardship among cancer survivors aged 18-64 years, compared with persons without a cancer history, CDC, the American Cancer Society, and the National Cancer Institute analyzed data from the 2011-2016 Medical Expenditure Panel Survey (MEPS).* The average annual out-of-pocket spending per person was significantly higher among cancer survivors ($1,000; 95% confidence interval [CI] = $886-$1,113) than among persons without a cancer history ($622; CI = $606-$639). Financial hardship was common; 25.3% of cancer survivors reported material hardship (e.g., problems paying medical bills), and 34.3% reported psychological hardship (e.g., worry about medical bills). These findings add to accumulating evidence documenting the financial difficulties of many cancer survivors. Mitigating the negative impact of cancer in the United States will require implementation of strategies aimed at alleviating the disproportionate financial hardship experienced by many survivors. These strategies include systematic screening for financial hardship at cancer diagnosis and throughout cancer care, integration of discussions about the potential for adverse financial consequences of treatments in shared treatment decision-making, and linkage of patients and survivors to available resources to ensure access to high-quality evidence-based care.

Colorectal cancer screening in the United States: Trends from 2008 to 2015 and variation by health insurance coverage.

Regular colorectal cancer (CRC) screening is recommended for reducing CRC incidence and mortality. This paper provides an updated analysis of CRC screening in the United States (US) and examines CRC screening by several features of health insurance coverage. Recommendation-consistent CRC screening was calculated for adults aged 50-75 in 2008, 2010, 2013 and 2015 using data from the National Health Interview Survey. CRC screening prevalence in 2015 was described overall and by sociodemographic subgroups. CRC screening by health insurance coverage was further examined using multivariable logistic regression, stratified by age (50-64 years and 65-75 years) and adjusted for age, race/ethnicity, sex, education, income, time in US, and comorbid conditions. Recommendation-consistent screening increased from 51.6% in 2008 to 58.3% in 2010 (p < 0.001). Use plateaued from 2010 to 2013 but increased to 61.3% in 2015 (p < 0.001). In 2015, adults aged 50-64 years with traditional employer-sponsored private insurance were more likely to be screened (62.2%) than those with traditional private direct purchase plans (50.9%) and the uninsured (24.8%) (p < 0.01, respectively). After multivariable adjustment, differences between traditional employer-sponsored private insurance and the uninsured remained statistically significant. Adults aged 65-75 with Medicare and private insurance were more likely to be screened (76.3%) than those with Medicare, no supplemental insurance (68.8%) or Medicare and Medicaid (65.2%) (p < 0.001). After multivariable adjustment, the differences between Medicare and private insurance and Medicare no supplemental insurance remained statistically significant. CRC screening rates have increased over time, but certain segments of the population, especially the uninsured, continue to screen below recommended levels.

Impact of sociodemographic characteristics on underemployment in a longitudinal, nationally representative study of cancer survivors: Evidence for the importance of gender and marital status.

BACKGROUND: We examined the longitudinal association between sociodemographic factors and an expanded definition of underemployment among those with and without cancer history in the United States. METHODS: Medical Expenditure Panel Survey data (2007-2013) were used in multivariable regression analyses to compare employment status between baseline and two-year follow-up among adults aged 25-62 years at baseline (n = 1,614 with and n = 39,324 without cancer). Underemployment was defined as becoming/staying unemployed, changing from full to part-time, or reducing part-time work significantly. Interaction effects between cancer history/time since diagnosis and predictors known to be associated with employment patterns, including age, gender/marital status, education, and health insurance status at baseline were modeled. RESULTS: Approximately 25% of cancer survivors and 21% of individuals without cancer reported underemployment at follow-up (p = 0.002). Multivariable analyses indicated that those with a cancer history report underemployment more frequently (24.7%) than those without cancer (21.4%, p = 0.002) with underemployment rates increasing with time since cancer diagnosis. A significant interaction between gender/marital status and cancer history and underemployment was found (p = 0.0004). There were no other significant interactions. Married female survivors diagnosed >10 years ago reported underemployment most commonly (38.7%), and married men without cancer reported underemployment most infrequently (14.0%). A wider absolute difference in underemployment reports for married versus unmarried women as compared to married versus unmarried men was evident, with the widest difference apparent for unmarried versus married women diagnosed >10 years ago (18.1% vs. 38.7%). CONCLUSION: Cancer survivors are more likely to experience underemployment than those without cancer. Longer time since cancer diagnosis and gender/marital status are critical factors in predicting those at greatest risk of underemployment. The impact of cancer on work should be systematically studied across sociodemographic groups and recognized as a component of comprehensive survivorship care.

Mammography Use Among Medicare Beneficiaries After Elimination of Cost Sharing.

BACKGROUND: We examined mammography use before and after Medicare eliminated cost sharing for screening mammography in January 2011. METHODS: Using National Health Interview Survey data, we examined changes in mammography use between 2010 and 2013 among Medicare beneficiaries aged 65-74 years. Logistic regression and predictive margins were used to examine changes in use after adjusting for covariates. RESULTS: In 2013, 74.7% of women reported a mammogram within 2 years, a 3.5 percentage point increase (95% confidence interval, -0.3, 7.2) compared with 2010. Increases occurred among women aged 65-69 years, unmarried women, and women with usual sources of care and 2-5 physician visits in the prior year. After adjustment, mammography use increased in 2013 versus 2010 (74.8% vs. 71.3%, P=0.039). Interactions between year and income, insurance, race, or ethnicity were not significant. CONCLUSIONS: There was a modest increase in mammography use from 2010 to 2013 among Medicare beneficiaries aged 65-74 years, possibly consistent with an effect of eliminating Medicare cost sharing during this time. Findings suggest that eliminating cost sharing might increase use of recommended screening services.

Association between serious psychological distress and health care use and expenditures by cancer history.

BACKGROUND: Serious psychological distress (SPD) is associated with adverse health outcomes such as poor quality of life and shorter survival in cancer survivors, but to the authors' knowledge, the relationship between SPD and health care use and medical expenditures is not clear. METHODS: A total of 4326 cancer survivors and 57,109 noncancer participants were identified from the 2008 through 2010 Medical Expenditure Panel Survey, a nationwide population-based survey, and their psychological distress was assessed with the 6-item Kessler Psychological Distress Scale (SPD defined by a score ≥13). The association between SPD and use and medical expenditures of various types of health care (office-based, outpatient, hospital inpatient, emergency department, dental, and prescriptions) was examined using a 2-part modeling approach that adjusted for demographic, personal, and comorbidity factors. The marginal effects of SPD on health care use and expenditures were calculated for cancer survivors and were compared with those of noncancer participants. RESULTS: The weighted prevalence of SPD in cancer survivors was 8.2% compared with 4.8% in the noncancer participants. SPD was significantly associated with higher use of all care types except dental care in cancer survivors. Cancer survivors with SPD spent $4431 (95% confidence interval, $3419-$5443) more than survivors without SPD on medical services each year, whereas this extra expenditure associated with SPD for participants without cancer was $2685 (95% confidence interval, $2099-$3271). CONCLUSIONS: In a national representative sample of cancer survivors, SPD was found to be associated with higher health care use and medical expenditures. Distress screening and psychosocial care in cancer survivors may help reduce the economic burden of cancer in the United States.

US trends in survival disparities among adolescents and young adults with non-Hodgkin lymphoma.

PURPOSE: Improvement in US survival rates among adolescents and young adults (AYAs, ages 15 through 39 years inclusive) diagnosed with non-Hodgkin lymphoma (NHL) has been documented over the last two decades. We examined national trends in survival disparities for AYAs with NHL by race/ethnicity and socioeconomic status (SES, county-level poverty) to further understand NHL and to begin monitoring health outcome disparities for this disease. METHODS: Surveillance Epidemiology and End Results data were used to calculate 5-year relative survival rates of AYAs diagnosed with NHL from 1992 to 2007 and followed through 2011. Absolute and relative disparities were computed using HD*Calc. Whether a significant linear trend was present was evaluated using Joinpoint. Analyses were replicated after excluding individuals with known HIV infection. RESULTS: The study sample included 9,573 total and 7,121 non-HIV cases of NHL. Five-year survival rates improved for all groups over time. Significant decreases were found in absolute disparities for race/ethnicity (non-HIV), in relative disparities for SES (total) and race/ethnicity (total and non-HIV) (all p < 0.05). Survival rates of non-Hispanic Blacks and Hispanics remained below than those of non-Hispanic Whites throughout the time period. CONCLUSION: Absolute and relative disparities in 5-year survival narrowed for AYAs with NHL over the time period. To continue to promote this trend, future research should investigate factors, particularly diagnostic delays and barriers to care, which continue to contribute to SES and racial/ethnic differences in survival. These factors may be particularly relevant to identify given the recent Affordable Care Act, which is designed to increase access to medical services, particularly for young adults.

Medical costs and productivity losses of cancer survivors--United States, 2008-2011.

The number of persons in the United States with a history of cancer has increased from 3 million in 1971 to approximately 13.4 million in 2012, representing 4.6% of the population. Given the advances in early detection and treatment of cancer and the aging of the U.S. population, the number of cancer survivors is projected to increase by >30% during the next decade, to approximately 18 million. Cancer survivors face many challenges with medical care follow-up, managing the long-term and late effects of treatments, monitoring for recurrence, and an increased risk for additional cancers. These survivors also face economic challenges, including limitations in work and daily activities, obtaining health insurance coverage and accessing health care, and increasing medical care costs. To estimate annual medical costs and productivity losses among male and female cancer survivors and persons without a cancer history, CDC, along with other organizations, analyzed data from the 2008-2011 Medical Expenditure Panel Survey (MEPS), sponsored by the Agency for Healthcare Research and Quality. The results indicate that the economic burden of cancer survivorship is substantial among all survivors. For male cancer survivors, during 2008-2011, average annual medical costs and productivity losses resulting from health problems per person and adjusted to 2011 dollars were significantly higher among cancer survivors than among persons without a cancer history, by $4,187 and $1,459, respectively; for females, the estimated annual costs per person were $3,293 and $1,330 higher among cancer survivors than among persons without a cancer history, respectively. These findings suggest the need to develop and evaluate health and employment intervention programs aimed at improving outcomes for cancer survivors and their families.

Importance of Patient Health Insurance Coverage and Out-of-Pocket Costs for Genomic Testing in Oncologists' Treatment Decisions.

PURPOSE: Use of genomic testing, especially multimarker panels, is increasing in the United States. Not all tests and related treatments are covered by health insurance, which can result in substantial patient out-of-pocket (OOP) costs. Little is known about oncologists' treatment decisions with respect to patient insurance coverage and OOP costs for genomic testing. METHODS: We identified 1,049 oncologists who used multimarker tumor panels from the 2017 National Survey of Precision Medicine in Cancer Treatment. Separate multivariable ordinal logistic regressions examined associations of oncologist-, practice-, and area-level characteristics and oncologists' ratings of importance (very, somewhat, or a little/not important) of insurance coverage and OOP costs for genomic testing in treatment decisions, adjusting for oncologist years of experience, sex, race and ethnicity, specialty, use of next-generation sequencing (NGS) tests, region, tumor boards, patient insurance mix, and area-level socioeconomic characteristics. RESULTS: Among oncologists, 47.3%, 32.7%, and 20.0% reported that patient insurance coverage for genomic testing was very, somewhat, or a little/not important, respectively, in treatment decisions. In addition, 56.9%, 28.0%, and 15.2% reported that OOP costs for testing were very, somewhat, or a little/not important, respectively. In adjusted analyses, oncologists who used NGS tests were more likely to report patient insurance and OOP costs as important (odds ratio [OR], 2.00 [95% CI, 1.16 to 3.45] and OR, 2.12 [95% CI, 1.22 to 3.68], respectively) in treatment decisions compared with oncologists who did not use these tests, as were oncologists who treated solid tumors, rather than only hematological cancers. More years of experience and higher percentages of Medicaid or self-paid/uninsured patients in the practice were associated with reporting insurance coverage (OR, 1.43 [95% CI, 1.09 to 1.89]) and OOP costs (OR, 1.51 [95% CI, 1.13 to 2.01]) as important. Oncologists in practices with molecular tumor boards for genomic tests were less likely to report coverage (OR, 0.63 [95% CI, 0.47 to 0.85]) and OOP costs (OR, 0.72 [95% CI, 0.53 to 0.97]) as important than their counterparts in practices without these tumor boards. CONCLUSION: Most oncologists rate patient health insurance and OOP costs for genomic tests as important considerations in subsequent treatment recommendations. Modifiable factors associated with these ratings can inform interventions to support patient-physician decision making about care.

Are survivors who report cancer-related financial problems more likely to forgo or delay medical care?

BACKGROUND: Financial problems caused by cancer and its treatment can substantially affect survivors and their families and create barriers to seeking health care. METHODS: The authors identified cancer survivors diagnosed as adults (n=1556) from the nationally representative 2010 National Health Interview Survey. Using multivariable logistic regression analyses, the authors report sociodemographic, clinical, and treatment-related factors associated with perceived cancer-related financial problems and the association between financial problems and forgoing or delaying health care because of cost. Adjusted percentages using the predictive marginals method are presented. RESULTS: Cancer-related financial problems were reported by 31.8% (95% confidence interval, 29.3%-34.5%) of survivors. Factors found to be significantly associated with cancer-related financial problems in survivors included younger age at diagnosis, minority race/ethnicity, history of chemotherapy or radiation treatment, recurrence or multiple cancers, and shorter time from diagnosis. After adjustment for covariates, respondents who reported financial problems were more likely to report delaying (18.3% vs 7.4%) or forgoing overall medical care (13.8% vs 5.0%), prescription medications (14.2% vs 7.6%), dental care (19.8% vs 8.3%), eyeglasses (13.9% vs 5.8%), and mental health care (3.9% vs 1.6%) than their counterparts without financial problems (all P<.05). CONCLUSIONS: Cancer-related financial problems are not only disproportionately represented in survivors who are younger, members of a minority group, and have a higher treatment burden, but may also contribute to survivors forgoing or delaying medical care after cancer.

Association of Employment Disruptions and Financial Hardship Among Individuals Diagnosed with Cancer in the United States: Findings from a Nationally Representative Study.

Financial hardship (FH), defined as adverse patient effects due to cancer costs, is experienced by approximately half of individuals diagnosed with cancer. Many individuals diagnosed with cancer also experience disruptions with their employment. This study examines associations of employment disruptions and FH among a nationally representative sample of individuals diagnosed with cancer in the United States. We utilized 2016/2017 Medical Expenditure Panel Survey Experiences with Cancer data from individuals who worked for pay following cancer diagnosis. Employment disruption included taking extended paid time off work; switching to part-time/less demanding jobs; and/or retiring early due to cancer diagnosis/treatment. FH domains included: material (e.g., borrowing money/financial sacrifices); psychologic (e.g., worrying about medical bills/income); and behavioral (delaying/forgoing healthcare services because of cost). Multivariable logistic regression analyses determined associations of employment disruption and FH. Among 732 individuals with a cancer history, 47.4% experienced employment disruptions; 55.9% experienced any FH. Any FH was significantly more common among individuals with versus without employment disruptions across multiple measures and domains (68.7% vs. 44.5%; P value of difference <0.0001). Individuals with employment disruptions were more likely to have any FH [OR, 2.38; 95% confidence interval (CI), 1.62-3.52] and more FHs (OR, 2.76; 95% CI, 1.96-3.89]. This study highlights that employment disruptions are common and significantly associated with multiple domains of FH among individuals with a cancer history. Employer workplace accommodation, physician discussions regarding potential impacts of cancer care on employment, and other policies to minimize employment disruptions among individuals diagnosed with cancer may reduce FH in this vulnerable population. Significance: Individuals diagnosed with cancer may have employment disruptions; they may also develop FHs. People with cancer who have employment changes are more likely to also have FHs. Physicians and employers can help individuals with cancer through advancing planning, workplace assistance, and improved medical leave and insurance policies.

"It's just not easy to understand": A mixed methods study of health insurance literacy and insurance plan decision-making in cancer survivors.

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 (ß = 19 s, 95% CI 2-38) and hospitalization costs (ß = 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.

Cancer-Related Care Costs and Employment Disruption: Recommendations to Reduce Patient Economic Burden as Part of Cancer Care Delivery.

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.

Impact of Pain on Employment and Financial Outcomes Among Cancer Survivors.

PURPOSE: Although pain is a frequently reported symptom among individuals with cancer, there is limited information on the impact of pain on employment or financial outcomes. This study used nationally representative data to examine the role of pain levels on employment and financial outcomes. METHODS: We used data from the 2016-2017 Medical Expenditure Panel Survey Experiences with Cancer Survivorship Supplement to identify 1,213 adults diagnosed with cancer. Multivariable logistic regression analyses were used to examine association of pain levels and self-reported employment and financial outcomes. RESULTS: Approximately 43% of adults with a cancer history reported no pain, 29% mild pain, 18% moderate pain, and 10% severe pain over the past 7 days. Compared with those reporting no pain, individuals reporting any pain had significantly increased likelihood of adverse employment outcomes including early retirement, feeling less productive, and staying at a job because of concerns about losing insurance. Individuals with any pain (compared with no pain) also had significantly increased likelihood of adverse financial outcomes including borrowing money or going into debt, inability to cover medical costs, and worrying about paying medical bills. For both employment and financial outcomes, there were dose-response relationships, with worse outcomes generally associated with greater pain levels. CONCLUSION: Pain is frequently associated with adverse employment and financial outcomes among cancer survivors, and greater pain is associated with worse outcomes. Better assessment of pain severity among survivors and implementation of strategies to assist with employment and financial objectives may be important steps to enhance patient-centered care.

Cost-Related Medication Nonadherence and Patient Cost Responsibility for Rural and Urban Cancer Survivors.

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.

Health insurance and financial hardship in cancer survivors during the COVID-19 pandemic.

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.