Navigating financial toxicity in patients with cancer: A multidisciplinary management approach.

Approximately one-half of individuals with cancer face personal economic burdens associated with the disease and its treatment, a problem known as financial toxicity (FT). FT more frequently affects socioeconomically vulnerable individuals and leads to subsequent adverse economic and health outcomes. Whereas multilevel systemic factors at the policy, payer, and provider levels drive FT, there are also accompanying intervenable patient-level factors that exacerbate FT in the setting of clinical care delivery. The primary strategy to intervene on FT at the patient level is financial navigation. Financial navigation uses comprehensive assessment of patients' risk factors for FT, guidance toward support resources, and referrals to assist patient financial needs during cancer care. Social workers or nurse navigators most frequently lead financial navigation. Oncologists and clinical provider teams are multidisciplinary partners who can support optimal FT management in the context of their clinical roles. Oncologists and clinical provider teams can proactively assess patient concerns about the financial hardship and employment effects of disease and treatment. They can respond by streamlining clinical treatment and care delivery planning and incorporating FT concerns into comprehensive goals of care discussions and coordinated symptom and psychosocial care. By understanding how age and life stage, socioeconomic, and cultural factors modify FT trajectory, oncologists and multidisciplinary health care teams can be engaged and informative in patient-centered, tailored FT management. The case presentations in this report provide a practical context to summarize authors' recommendations for patient-level FT management, supported by a review of key supporting evidence and a discussion of challenges to mitigating FT in oncology care. CA Cancer J Clin. 2022;72:437-453.

Health-related social needs, medical financial hardship, and mortality risk among cancer survivors.

BACKGROUND: Cancer survivors may face challenges affording food, housing, and other living necessities, which are known as health-related social needs (HRSNs). However, little is known about the associations of HRSNs and mortality risk among adult cancer survivors. METHODS: Adult cancer survivors were identified from the 2013-2018 National Health Interview Survey (NHIS) and linked with the NHIS Mortality File with vital status through December 31, 2019. HRSNs, measured by food insecurity, and nonmedical financial worries (e.g., housing costs), was categorized as severe, moderate, and minor/none. Medical financial hardship, including material, psychological, and behavioral domains, was categorized as 2-3, 1, or 0 domains. Using age as the time scale, the associations of HRSNs and medical financial hardship and mortality risk were assessed with weighted adjusted Cox proportional hazards models. RESULTS: Among cancer survivors 18-64 years old (n = 5855), 25.5% and 18.3% reported moderate and severe levels of HRSNs, respectively; among survivors 65-79 years old (n = 5918), 15.6% and 6.6% reported moderate and severe levels of HRSNs, respectively. Among cancer survivors 18-64 years old, severe HRSNs was associated with increased mortality risk (hazards ratio [HR], 2.00; 95% confidence interval [CI], 1.36-2.93, p < .001; reference = minor/none) in adjusted analyses. Among cancer survivors 65-79 years old, 2-3 domains of medical financial hardship was associated with increased mortality risk (HR, 1.58; 95% CI, 1.13-2.20, p = .007; reference = 0 domain). CONCLUSIONS: HSRNs and financial hardship are associated with increased mortality risk among cancer survivors; comprehensive assessment of HRSN and financial hardship connecting patients with relevant services can inform efforts to mitigate adverse consequences of cancer.

Individual- and community-level social determinants of health are associated with cognition in older adults with focal epilepsy.

OBJECTIVE: Epilepsy is associated with significant health disparities, including access to specialized care and adverse outcomes that have been associated with several social determinants of health (SDOH). We sought to examine the relationship between individual- and community-level SDOH and cognitive outcomes in older adults with epilepsy. MATERIALS AND METHODS: We collected clinical, SDOH, and neuropsychological data in 57 older adults with epilepsy. Individual-level SDOH included patient factors (quality of education, income, insurance, marital status) and early-life environmental factors (parental education and occupation, childhood employment). Neighborhood deprivation was measured with the Area Deprivation Index (ADI). Stepwise regressions were conducted to examine the independent contribution of individual-level SDOH to cognitive performance, and Spearman rho correlations were conducted to examine the relationship between ADI and cognitive performance. The SDOH profiles of patients who met the criteria for cognitive impairment were examined. RESULTS: After controlling for clinical variables, patient factors (public health insurance, poorer quality of education) and early-life environmental factors (lower mother's education, lower father's and mother's occupational complexity, history of childhood employment) were significant predictors of lower performance on measures of global cognition, verbal learning and memory, processing speed, and executive function. Higher ADI values (greater disadvantage) were associated with lower scores on global cognitive measures, verbal learning and memory, and executive function. Patients who met criteria for cognitive impairment had, on average, a greater number of adverse SDOH, including lower household incomes and father's education, and higher ADI values compared to those who were cognitively intact. CONCLUSION: We provide new evidence of the role of individual- and community-level SDOH on cognitive outcomes in older adults with epilepsy. This emerging literature highlights the need to examine SDOH beyond epilepsy-related clinical factors. These data could inform the development of interventions focused on increasing access to epilepsy care, education, and resources and promoting brain and cognitive health within the most at-risk communities.

Patient perspectives of prostate cancer screening vary by race following 2018 guideline changes.

BACKGROUND: The 2018 US Preventive Services Task Force guidelines recommend individualizing prostate cancer screening in 55- to 69-year-old men. Given the higher incidence of prostate cancer in African American (AA) compared to non-Hispanic White (NHW) men, this study compared reported rates of prostate-specific antigen (PSA) screening hypothesizing that it would not be commensurate with the relative risk between these two groups. METHODS: Using the 2020 Behavioral Risk Factor Surveillance System, we identified 43,685 men (40,301 NHW and 3384 AA) interviewed about PSA screening. RESULTS: AA men had an odds ratio (OR) of 0.80 (95% confidence interval [CI], 0.69-0.93; p = .004) of reporting PSA screening; sequentially correcting for access to care, smoking, and age had minimal effect on this finding, but when correcting for income significantly attenuated this difference (OR, 0.95; 95% CI, 0.81-1.12). Further adding education level eliminated the effect size of AA race entirely with OR, 0.99 (95% CI, 0.84-1.17; p = .91). Further analysis found significant interaction between education and race, with college-educated AA men having 1.42 OR of receiving screening compared to college-educated NHW men. CONCLUSIONS: Despite prostate cancer being more common and having higher population-level mortality in AA than NHW men, PSA screening and education patterns do not reflect this increased risk even when adjusting for health access disparities. The authors' findings of significant effect from both income and education suggest that systemic racism is an important factor in the observed difference in PSA screening between AA men and NHW men. LAY SUMMARY: In the United States, prostate cancer is more common in African American men New guidelines from 2018 encourage physicians to consider risk factors in deciding whether or not to recommend screening, but overall African American men continue to be screened at a lower rate than non-Hispanic White men This effect disappears when correcting for income and education level, suggesting that several factors including systemic racism, medical mistrust, and self-advocacy may impact this observed difference.

The role of language in mammography orders among low-income Latinas over a 10-year period.

INTRODUCTION: Latinas in the United States have higher mortality from breast cancer, but longitudinal studies of mammography ordering (a crucial initial step towards screening) in primary care are lacking. METHODS: We conducted an analysis of mammography order rates in Latinas (by language preference) and non-Latina white women (N = 181,755) over a > 10 year period in a multi-state network of community health centers (CHCs). We evaluated two outcomes (ever having a mammogram order and annual rate of mammography orders) using generalized estimating equation modeling. RESULTS: Approximately one-third of all patients had ever had a mammogram order. Among those receiving mammogram orders, English-preferring Latinas had lower mammogram order rates than non-Hispanic white women (RR = 0.92, 95% CI = 0.89-0.95). Spanish-preferring Latinas had higher odds of ever having a mammogram ordered than non-Hispanic whites (odds ratio = 2.12, 95% CI = 2.06-2.18) and, if ever ordered, had a higher rate of annual mammogram orders (rate ratio = 1.53, 95% CI = 1.50-1.56). CONCLUSION: These findings suggest that breast cancer detection barriers in low-income Latinas may not stem from a lack of orders in primary care, but in the subsequent accessibility of receiving ordered services.

Social support experiences of hispanic/latino parents of childhood cancer survivors in a safety-net hospital: a qualitative study.

PURPOSE: To describe the social support experiences of Hispanic/Latino parents while caregiving for childhood cancer survivors. RESEARCH APPROACH: Semi-structured one-on-one interviews were conducted among 15 caregivers from a safety-net hospital in Los Angeles. A thematic analysis approach was used to analyze data. FINDINGS: The positive influence of social support throughout their caregiving experience included (1) sharing information-enhanced knowledge, (2) receiving comfort and encouragement, (3) receiving tangible assistance reducing the caregiving burden, and (4) enhancing caregiving empowerment/self-efficacy. Sub-themes regarding the lack of social support included (1) being a single parent and (2) family and friends withdrawing after the child's cancer diagnosis. CONCLUSION: We found Hispanic/Latino parents strongly value social support as it enables them to have essential resources that support caregiving for their child and themselves. Efforts should ensure that caregivers are routinely screened to identify their supportive needs so that support services for caregivers can be optimized and tailored, as those with a lack of social support may experience excessive caregiver burden.

Patterns of Medical Care Cost by Service Type for Patients With Recurrent and De Novo Advanced Cancer.

OBJECTIVES: There is limited knowledge about the cost patterns of patients who receive a diagnosis of de novo and recurrent advanced cancers in the United States. METHODS: Data on patients who received a diagnosis of de novo stage IV or recurrent breast, colorectal, or lung cancer between 2000 and 2012 from 3 integrated health systems were used to estimate average annual costs for total, ambulatory, inpatient, medication, and other services during (1) 12 months preceding de novo or recurrent diagnosis (preindex) and (2) diagnosis month through 11 months after (postindex), from the payer perspective. Generalized linear regression models estimated costs adjusting for patient and clinical factors. RESULTS: Patients who developed a recurrence <1 year after their initial cancer diagnosis had significantly higher total costs in the preindex period than those with recurrence ≥1 year after initial diagnosis and those with de novo stage IV disease across all cancers (all P < .05). Patients with de novo stage IV breast and colorectal cancer had significantly higher total costs in the postindex period than patients with cancer recurrent in <1 year and ≥1 year (all P < .05), respectively. Patients in de novo stage IV and those with recurrence in ≥1 year experienced significantly higher postindex costs than the preindex period (all P < .001). CONCLUSIONS: Our findings reveal distinct cost patterns between patients with de novo stage IV, recurrent <1-year, and recurrent ≥1-year cancer, suggesting unique care trajectories that may influence resource use and planning. Future cost studies among patients with advanced cancer should account for de novo versus recurrent diagnoses and timing of recurrence to obtain estimates that accurately reflect these care pattern complexities.

Social Risk Factors and Desire for Assistance Among Patients Receiving Subsidized Health Care Insurance in a US-Based Integrated Delivery System.

PURPOSE: Because social conditions such as food insecurity and housing instability shape health outcomes, health systems are increasingly screening for and addressing patients' social risks. This study documented the prevalence of social risks and examined the desire for assistance in addressing those risks in a US-based integrated delivery system. METHODS: A survey was administered to Kaiser Permanente members on subsidized exchange health insurance plans (2018-2019). The survey included questions about 4 domains of social risks, desire for help, and attitudes. We conducted a descriptive analysis and estimated multivariate modified Poisson regression models. RESULTS: Of 438 participants, 212 (48%) reported at least 1 social risk factor. Housing instability was the most common (70%) factor reported. Members with social risks reported more discomfort being screened for social risks (14.2% vs 5.4%; P = .002) than those without risks, although 90% of participants believed that health systems should assist in addressing social risks. Among those with 1-2 social risks, however, only 27% desired assistance. Non-Hispanic Black participants who reported a social risk were more than twice as likely to desire assistance compared with non-Hispanic White participants (adjusted relative risk [RR] 2.2; 95% CI, 1.3-3.8). CONCLUSIONS: Athough most survey participants believed health systems have a role in addressing social risks, a minority of those reporting a risk wanted assistance and reported more discomfort being screened for risk factors than those without risks. Health systems should work to increase the comfort of patients in reporting risks, explore how to successfully assist them when desired, and offer resources to address these risks outside the health care sector.VISUAL ABSTRACT.

Social risks and social needs in a health insurance exchange sample: a longitudinal evaluation of utilization.

BACKGROUND: Health systems are increasingly attempting to intervene on social adversity as a strategy to improve health care outcomes. To inform health system efforts to screen for social adversity, we sought to explore the stability of social risk and interest in assistance over time and to evaluate whether the social risk was associated with subsequent healthcare utilization. METHODS: We surveyed Kaiser Permanente members receiving subsidies from the healthcare exchange in Southern California to assess their social risk and desire for assistance using the Accountable Health Communities instrument. A subset of initial respondents was randomized to be re-surveyed at either three or six months later. RESULTS: A total of 228 participants completed the survey at both time points. Social risks were moderate to strongly stable across three and six months (Kappa range = .59-.89); however, social adversity profiles that included participants' desire for assistance were more labile (3-month Kappa = .52; 95% CI = .41-.64 & 6-month Kappa = .48; 95% CI = .36-.6). Only housing-related social risks were associated with an increase in acute care (emergency, urgent care) six months after initial screening; no other associations between social risk and utilization were observed. CONCLUSIONS: This study suggests that screening for social risk may be appropriate at intervals of six months, or perhaps longer, but that assessing desire for assistance may need to occur more frequently. Housing risks were associated with increases in acute care. Health systems may need to engage in screening and referral to resources to improve overall care and ultimately patient total health.

Association of race and health care system with disease stage and survival in veterans with larynx cancer.

BACKGROUND: Black patients with laryngeal squamous cell carcinoma (LSCC) historically have inferior outcomes in comparison with White patients. The authors investigated these racial disparities within the Veterans Health Administration (VHA), an equal-access system, and within the Surveillance, Epidemiology, and End Results (SEER) program, which is representative of the US hybrid-payer system. METHODS: Patients with invasive (T1 or greater) LSCC were included from SEER (2004-2015) and the VHA (2000-2017). The primary outcomes of overall survival (OS) and larynx cancer-specific survival (LCS) were evaluated in Cox and Fine-Gray models. RESULTS: In the SEER cohort (7122 patients: 82.6% White and 17.4% Black), Black patients were more likely to present with advanced disease and had inferior OS (hazard ratio [HR], 1.37; 95% CI, 1.26-1.50; P < .0001) in a multivariable analysis. Black LCS was worse in a univariable analysis (HR, 1.42; 95% CI, 1.27-1.58; P < .0001), but this effect was attenuated by 83% when the authors controlled for the TNM category and was found to be insignificant in a multivariable analysis (HR, 1.05; 95% CI, 0.93-1.18; P = .42). In the VHA cohort (9248 patients: 79.7% White and 20.3% Black), the 2 racial cohorts presented with similar tumor characteristics and similar OS (HR, 0.95; 95% CI, 0.89-1.02; P = .14). Black LCS was similar in univariable (HR, 1.10; 95% CI, 1.00-1.22; P = .05) and multivariable analyses (HR, 1.02; 95% CI, 0.92-1.14; P = .67). CONCLUSIONS: Black patients with LSCC had a tumor burden at diagnosis and survival outcomes comparable to those of White patients within the VHA; this was counter to what was observed in the SEER analysis and prior national trends. This study's findings point toward the notable role of health care access in contributing to racial health disparities in the realm of larynx cancer.

Association of Financial Worry and Material Financial Risk with Short-Term Ambulatory Healthcare Utilization in a Sample of Subsidized Exchange Patients.

BACKGROUND: Financial burden can affect healthcare utilization. Few studies have assessed the short-term associations between material (debt, trouble paying rent) and psychological (worry or distress about affording future healthcare) financial risks, and subsequent outpatient and emergency healthcare use. Worry was defined as concerns about affording future healthcare. OBJECTIVE: Examine whether worry about affording healthcare is associated with healthcare utilization when controlling for material risk and general anxiety DESIGN: Longitudinal observational study PARTICIPANTS: Kaiser Permanente members with exchange-based federally subsidized health insurance (n = 450, 45% response rate) MAIN MEASURES: Survey measures of financial risks (material difficulty paying for medical care and worry about affording healthcare) and general anxiety. Healthcare use (primary care, urgent care, emergency department, and outpatient specialty visits) in the 6 months following survey completion. KEY RESULTS: Emergency department and primary care visits were not associated with material risk, worry about affording care, or general anxiety in individual and pooled analyses (all 95% confidence intervals (CI) for relative risk (RR) included 1). Although no individual predictor was associated with urgent care use (all 95% CIs for RR included 1), worry about affording prescriptions (relative risk (RR) = 2.01; 95% CI 1.14, 3.55) and general anxiety (RR = 0.38; 95% CI 0.15, 0.95) were significant when included in the same model, suggesting the two confounded each other. Worry about affording healthcare services was associated with fewer specialty care visits (RR = 0.40; 95% CI 0.25, 0.64) even when controlling for material risk and general anxiety, although general anxiety was also associated with more specialty care visits (RR = 1.98; 95% CI, 1.23, 3.18). CONCLUSIONS: Screening for both general anxiety and financial worry may assist with specialty care utilization. Identifying these concerns may provide more opportunities to assist patients. Future research should examine interventions to reduce worry about cost of care.

Quality of care at safety-net hospitals and the impact on pay-for-performance reimbursement.

BACKGROUND: Pay-for-performance reimbursement ties hospital payments to standardized quality-of-care metrics. To the authors' knowledge, the impact of pay-for-performance reimbursement models on hospitals caring primarily for uninsured or underinsured patients remains poorly defined. The objective of the current study was to evaluate how standardized quality-of-care metrics vary by a hospital's propensity to care for uninsured or underinsured patients and demonstrate the potential impact that pay-for-performance reimbursement could have on hospitals caring for the underserved. METHODS: The authors identified 1,703,865 patients with cancer who were diagnosed between 2004 and 2015 and treated at 1344 hospitals. Hospital safety-net burden was defined as the percentage of uninsured or Medicaid patients cared for by that hospital, categorizing hospitals into low-burden, medium-burden, and high-burden hospitals. The authors evaluated the impact of safety-net burden on concordance with 20 standardized quality-of-care measures, adjusting for differences in patient age, sex, stage of disease at diagnosis, and comorbidity. RESULTS: Patients who were treated at high-burden hospitals were more likely to be young, male, Black and/or Hispanic, and to reside in a low-income and low-educated region. High-burden hospitals had lower adherence to 13 of 20 quality measures compared with low-burden hospitals (all P < .05). Among the 350 high-burden hospitals, concordance with quality measures was found to be lowest for those caring for the highest percentage of uninsured or Medicaid patients, minority patients, and less educated patients (all P < .001). CONCLUSIONS: Hospitals caring for uninsured or underinsured individuals have decreased quality-of-care measures. Under pay-for-performance reimbursement models, these lower quality-of-care scores could decrease hospital payments, potentially increasing health disparities for at-risk patients with cancer.

Cardiovascular Outcomes in Relation to Antihypertensive Medication Use in Women with and Without Cancer: Results from the Women's Health Initiative.

BACKGROUND: Recent clinical trials have evaluated angiotensin-converting enzyme (ACE) inhibitors (ACEis), angiotensin receptor blockers (ARBs), and beta blockers (BBs) in relation to cardiotoxicity in patients with cancer, typically defined by ejection fraction declines. However, these trials have not examined long-term, hard clinical endpoints. Within a prospective study, we examined the risk of heart failure (HF) and coronary heart disease (CHD) events in relation to use of commonly used antihypertensive medications, including ACEis/ARBs, BBs, calcium channel blockers (CCB), and diuretics, comparing women with and without cancer. MATERIALS AND METHODS: In a cohort of 56,997 Women's Health Initiative study participants free of cardiovascular disease who received antihypertensive treatment, we used multivariable-adjusted Cox regression models to calculate the hazard ratios (HRs) of developing CHD, HF, and a composite outcome of cardiac events (combining CHD and HF) in relation to use of ACEis/ARBs, CCBs, or diuretics versus BBs, separately in women with and without cancer. RESULTS: Whereas there was no difference in risk of cardiac events comparing ACEi/ARB with BB use among cancer-free women (HR = 0.99 [0.88-1.12]), among cancer survivors ACEi/ARB users were at a 2.24-fold risk of total cardiac events (1.18-4.24); p-interaction = .06). When investigated in relation to CHD only, an increased risk was similarly observed in ACEi/ARB versus BB use for cancer survivors (HR = 1.87 [0.88-3.95]) but not in cancer-free women (HR = 0.91 [0.79-1.06]; p-interaction = .04). A similar pattern was also seen in relation to HF but did not reach statistical significance (p-interaction = .23). CONCLUSION: These results from this observational study suggest differing risks of cardiac events in relation to antihypertensive medications depending on history of cancer. Although these results require replication before becoming actionable in a clinical setting, they suggest the need for more rigorous examination of the effect of antihypertensive choice on long-term cardiac outcomes in cancer survivors. IMPLICATIONS FOR PRACTICE: Although additional research is needed to replicate these findings, these data from a large, nationally representative sample of postmenopausal women indicate that beta blockers are favorable to angiotensin-converting enzyme inhibitors in reducing the risk of cardiac events among cancer survivors. This differs from the patterns observed in a noncancer cohort, which largely mirrors what is found in the randomized clinical trials in the general population.

Decision Regret Related to Urinary Diversion Choice among Patients Treated with Cystectomy.

PURPOSE: Patients who undergo cystectomy due to bladder cancer can elect an ileal conduit or a neobladder for urinary diversion. Decision regret related to this choice is an important and undesirable patient reported outcome. Our objective was to compare the severity of decision regret experienced by patients with a neobladder vs an ileal conduit. MATERIALS AND METHODS: We analyzed data from a longitudinal cohort study of patients who underwent cystectomy from 2013 to 2015. We applied multivariable linear regression to examine associations of the urinary diversion method (neobladder vs ileal conduit) with decision regret measured with the DRS (Decision Regret Scale) 6 and 18 months after cystectomy. Covariates included demographic and clinical characteristics, health care utilization and complications after cystectomy, quality of life and factors related to the decision making process, including informed and shared decision making, and goal concordance. RESULTS: Of the 192 patients in our cohort 141 received an ileal conduit and 51 received a neobladder. We observed no significant difference in the DRS score in patients with a neobladder vs an ileal conduit at 6 or 18 months (b=-1.28, 95% CI -9.07-6.53, vs b=-1.55, 95% CI -12.48-9.38). However, informed decision making was negatively related to decision regret at 6 and 18 months (b=-13.08, 95% CI -17.05--9.11, and b=-8.54, 95% CI -4.26--2.63, respectively). Quality of life was negatively associated with decision regret at 18 months (b=-5.50, 95% CI -8.95--2.03). CONCLUSIONS: Patients treated with cystectomy who were more informed about bladder reconstruction options experienced less regret independent of the method selected. Efforts to inform and prepare patients for the bladder reconstruction decision may help prevent decision regret.

Worry About Daily Financial Needs and Food Insecurity Among Cancer Survivors in the United States.

BACKGROUND: A cancer diagnosis can impose substantial medical financial burden on individuals and may limit their ability to work. However, less is known about worry for nonmedical financial needs and food insecurity among cancer survivors. METHODS: The National Health Interview Survey (2013-2017) was used to identify cancer survivors (age 18-39 years, n=771; age 40-64 years, n=4,269; age ≥65 years, n=7,101) and individuals without a cancer history (age 18-39 years, n=53,262; age 40-64 years, n=60,141; age ≥65 years, n=30,261). For both cancer survivors and the noncancer group, adjusted proportions were generated for (1) financial worry ("very/moderately/not worried") about retirement, standard of living, monthly bills, and housing costs; and (2) food insecurity ("often/sometimes/not true") regarding whether food would run out, the fact that food bought did not last, and the inability to afford balanced meals. Further adjusted analyses examined intensity measures ("severe/moderate/minor or none") of financial worry and food insecurity among cancer survivors only. RESULTS: Compared with individuals without a cancer history, cancer survivors aged 18 to 39 years reported consistently higher "very worried" levels regarding retirement (25.5% vs 16.9%; P<.001), standard of living (20.4% vs 12.9%; P<.001), monthly bills (14.9% vs 10.3%; P=.002), and housing costs (13.6% vs 8.9%; P=.001); and higher "often true" levels regarding worry about food running out (7.9% vs 4.6%; P=.004), food not lasting (7.6% vs 3.3%; P=.003), and being unable to afford balanced meals (6.3% vs 3.4%; P=.007). Findings were not as consistent for cancer survivors aged 40 to 64 years. In contrast, results were generally similar for adults aged ≥65 years with/without a cancer history. Among cancer survivors, 57.6% (age 18-39 years; P<.001), 51.9% (age 40-64 years; P<.001), and 23.8% (age ≥65 years; referent) reported severe/moderate financial worry intensity, and 27.0% (age 18-39 years; P<.001), 14.8% (age 40-64 years; P<.001), and 6.3% (age ≥65 years; referent) experienced severe/moderate food insecurity intensity. Lower income and higher comorbidities were generally associated with greater intensities of financial worry and food insecurity in all 3 age groups. CONCLUSIONS: Younger cancer survivors experience greater financial worry and food insecurity. In addition to coping with medical costs, cancer survivors with low income and multiple comorbidities struggle to pay for daily living needs, such as food, housing, and monthly bills.

The effect of multiple recruitment contacts on response rates and patterns of missing data in a survey of bladder cancer survivors 6 months after cystectomy.

PURPOSE: The Bladder Cancer Quality of Life Study collected detailed and sensitive patient-reported outcomes from bladder cancer survivors in the period after bladder removal surgery, when participation in survey research may present a burden. This paper describes the study recruitment methods and examines the response rates and patterns of missing data. METHODS: Detailed surveys focusing on quality of life, healthcare decision-making, and healthcare expenses were mailed to patients 5-7 months after cystectomy. We conducted up to 10 follow-up recruitment calls. We analyzed survey completion rates following each contact in relation to demographic and clinical characteristics, and patterns of missing data across survey content areas. RESULTS: The overall response rate was 71% (n = 269/379). This was consistent across patient clinical characteristics; response rates were significantly higher among patients over age 70 and significantly lower among racial and ethnic minority patients compared to non-Hispanic white patients. Each follow-up contact resulted in marginal survey completion rates of at least 10%. Rates of missing data were low across most content areas, even for potentially sensitive questions. Rates of missing data differed significantly by sex, age, and race/ethnicity. CONCLUSIONS: Despite the effort required to participate in research, this population of cancer survivors showed willingness to share detailed information about quality of life, health care decision-making, and expenses, soon after major cancer surgery. Additional contacts were effective at increasing participation. Response patterns differed by race/ethnicity and other demographic factors. Our data collection methods show that it is feasible to gather detailed patient-reported outcomes during this challenging period.

Workflow Requirements for Cost-of-Care Conversations in Outpatient Settings Providing Oncology or Primary Care: A Qualitative, Human-Centered Design Study.

Background: Patients prefer to discuss costs in the clinical setting, but physicians and teams may be unprepared to incorporate cost discussions into existing workflows. Objective: To understand and improve clinical workflows related to cost-of-care conversations. Design: Qualitative human-centered design study. Setting: 2 integrated health systems in the U.S. Pacific Northwest: a system-wide oncology service line and a system-wide primary care service line. Participants: Clinicians, clinical team members, operations staff, and patients. Measurements: Ethnographic observations were made at the integrated health systems, assessing barriers to and facilitators of discussing costs with patients. Three unique patient experiences of having financial concerns addressed in the clinic were designed. These experiences were refined after in-person interviews with patients (n = 20). Data were synthesized into a set of clinical workflow requirements. Results: Most patient cost concerns take 1 of 3 pathways: informing clinical care decision making, planning and budgeting concerns, and addressing immediate financial hardship. Workflow requirements include organizational recognition of the need for clinic-based cost-of-care conversations; access to cost and health plan benefit data to support each conversation pathway; clear team member roles and responsibilities for addressing cost-of-care concerns; a patient experience where cost questions are normal and each patient's preferences and privacy are respected; patients know who to go to with cost questions; patients' concerns are documented to minimize repetition to multiple team members; and patients learn their expected out-of-pocket costs before treatment begins. Limitation: Results may have limited generalizability to other health care settings, and the study did not test the effectiveness of the workflows developed. Conclusion: Clinic-based workflows for cost-of-care conversations that optimize patients' care experience require organizational commitment to addressing cost concerns, clear roles and responsibilities, appropriate and complete data access, and a team-based approach. Primary Funding Source: Robert Wood Johnson Foundation.

Medical financial hardship among cancer survivors in the United States.

BACKGROUND: The current study examined medical financial hardship in cancer survivors and those without a cancer history in the United States. METHODS: The 2013 to 2016 National Health Interview Survey was used to identify cancer survivors (stratified by ages 18-49 years [1424 survivors], ages 50-64 years [2916 survivors], and ages ≥65 years [6014 survivors]) and individuals without a cancer history (ages 18-64 years [66,951 individuals], ages 50-64 years [31,741 individuals], and ages ≥65 years [25,744 individuals]). Medical financial hardship was categorized into 3 domains: 1) material (eg, problems paying medical bills); 2) psychological (eg, worrying about paying medical bills); and 3) behavioral (eg, delaying/forgoing care due to cost). Generalized ordinal logistic regressions were used to examine the associations between cancer history, hardship, and health insurance deductibles/health savings accounts (among privately insured cancer survivors aged 18-64 years only). RESULTS: Compared with those without a cancer history, cancer survivors were more likely to report any material (ages 18-49 years: 43.4% vs 30.1%; ages 50-64 years: 32.8% vs 27.8%; and ages ≥65 years: 17.3% vs 14.7%), psychological (ages 18-49 years: 53.5% vs 47.1%), and behavioral (ages 18-49 years: 30.6% vs 21.8%; and ages 50-64 years: 27.2% vs 23.4%) measure of financial hardship, and multiple domains of hardship (age groups 18-49 years and 50-64 years; all P < .01). Among privately insured survivors, having a high-deductible health plan without a health savings account was found to be associated with greater hardship compared with having low-deductible insurance. CONCLUSIONS: Younger cancer survivors are particularly vulnerable to material, psychological, and behavioral medical financial hardship. Interventions designed to reduce financial hardship should consider multiple domains of hardship as well as insurance benefit design.

Long-Term Patterns of Oral Anticancer Agent Adoption, Duration, and Switching in Patients With CML.

BACKGROUND: Oral tyrosine kinase inhibitors (TKIs) have been the standard of care for chronic myeloid leukemia (CML) since 2001. However, few studies have evaluated changes in the treatment landscape of CML over time. This study assessed the long-term treatment patterns of oral anticancer therapies among patients with CML. METHODS: This retrospective cohort study included patients newly diagnosed with CML between January 1, 2000, and December 31, 2016, from 10 integrated healthcare systems. The proportion of patients treated with 5 FDA-approved oral TKI agents-bosutinib, dasatinib, imatinib, nilotinib, and ponatinib-in the 12 months after diagnosis were measured, overall and by year, between 2000 and 2017. We assessed the use of each oral agent through the fourth-line setting. Multivariable logistic regression estimated the odds of receiving any oral agent, adjusting for sociodemographic and clinical characteristics. RESULTS: Among 853 patients with CML, 81% received an oral agent between 2000 and 2017. Use of non-oral therapies decreased from 100% in 2000 to 5% in 2005, coinciding with imatinib uptake from 65% in 2001 to 98% in 2005. Approximately 28% of patients switched to a second-line agent, 9% switched to a third-line agent, and 2% switched to a fourth-line agent. Adjusted analysis showed that age at diagnosis, year of diagnosis, and comorbidity burden were statistically significantly associated with odds of receiving an oral agent. CONCLUSIONS: A dramatic shift was seen in CML treatments away from traditional, nonoral chemotherapy toward use of novel oral TKIs between 2000 and 2017. As the costs of oral anticancer agents reach new highs, studies assessing the long-term health and financial outcomes among patients with CML are warranted.

Cancer History, Health Insurance Coverage, and Cost-Related Medication Nonadherence and Medication Cost-Coping Strategies in the United States.

OBJECTIVES: To evaluate the relationship between cancer history and cost-related medication nonadherence (CRN) as well as cost-coping strategies, by health insurance coverage. METHODS: We used the 2013 to 2016 National Health Interview Survey to identify adults aged 18 to 64 years with (n = 3599) and without (n = 56 909) a cancer history. Cost-related changes in medication use included (1) CRN, measured as skipping, taking less, or delaying medication because of cost, and (2) cost-coping strategies, measured as requesting lower cost medication or using alternative therapies to save money. Separate multivariable logistic regressions were used to calculate the adjusted odds ratios (AORs) of CRN and cost-coping strategies associated with cancer history, stratified by insurance. RESULTS: Cancer survivors were more likely than adults without a cancer history to report CRN (AOR 1.26; 95% confidence interval [CI] 1.10-1.43) and cost-coping strategies (AOR 1.10; 95% CI 0.99-1.19). Among the privately insured, the difference in CRN by cancer history was the greatest among those enrolled in high-deductible health plans (HDHPs) without health savings accounts (HSAs) (AOR 1.78; 95% CI 1.30-2.44). Among adults with HDHP and HSA, cancer survivors were less likely to report cost-coping strategies (AOR 0.62; 95% CI 0.42-0.90). Regardless of cancer history, CRN and cost-coping strategies were the highest for those uninsured, enrolled in HDHP without HSA, and without prescription drug coverage under their health plan (all P<.001). CONCLUSIONS: Cancer survivors are prone to CRN and more likely to use cost-coping strategies. Expanding options for health insurance coverage, use of HSAs for those with HDHP, and enhanced prescription drug coverage may effectively address CRN.