Key PointsQuestion
Among patients 70 years or older with advanced cancer, is financial toxicity (FT) associated with health-related quality of life (HRQoL), and are conversations between patients and oncologists held regarding cost of care?
Findings
In this cross-sectional study of 536 older patients with advanced cancer, FT was reported by 18% of participants and was associated with higher levels of depression, anxiety, and distress and lower HRQoL. Almost 50% of patients experiencing FT had a conversation with their health care professional about costs.
Meaning
In this study, patients 70 years or older were found to be at a high risk of FT; further research is warranted to create interventions that may help reduce this burden.
Importance
Financial toxicity (FT), unintended and unanticipated financial burden experienced by cancer patients undergoing cancer care, is associated with negative consequences and increased risk of mortality. Older patients (≥70 years) with cancer are at risk for FT, yet data are limited on FT and whether oncologists discuss FT with their patients.
Objective
To examine the prevalence of FT in older adults with advanced cancer, its association with health-related quality of life (HRQoL), and cost conversations between oncologists and patients.
Design, Setting, and Participants
This cross-sectional secondary analysis was performed on baseline data from the Improving Communication in Older Cancer Patients and Their Caregivers study, a cluster randomized trial from 31 community oncology practices across the US that was conducted from October 29, 2014, to April 28, 2017. Participants included 536 patients with advanced cancer who answered 3 questions regarding financial toxicity. Data were analyzed from September 1, 2019, to May 1, 2020.
Exposure
Older patients undergoing cancer care treatments.
Main Outcomes and Measures
The main outcome looked at FT and its association with HRQoL. Three questions were used to identify patients 70 years or older experiencing FT. Multivariable linear regression models were used to assess the independent associations of FT with HRQoL. A single audio-recorded clinic transcript was analyzed within 4 weeks of enrollment for patients with FT. The framework method was used to identify frequency and themes related to cost conversations.
Results
This study evaluated 536 patients 70 years or older with advanced cancer. Ninety-eight patients (18.3%) reported FT; mean (SD) age was 76.4 (5.4) years; 59 (60.2%) were female, 14 (14.3%) were Black/African American, 91 (92.9%) were not employed, and 29 (29.6%) had Medicare as their sole insurance coverage. On multivariate regression analyses, FT was associated with higher levels of depression (β = 0.81; 95% CI, 0.15-1.48), anxiety (β = 1.67; 95% CI, 0.74-2.61), and distress (β = 0.73; 95% CI, 0.08-1.39) and lower HRQoL (β = –5.30; 95% CI, –8.92 to –1.69). Among those who reported FT, 49% had a conversation with their health care professional about costs. Most conversations (79%) were initiated by oncologists or patients. Four themes were generated from cost conversations: statements regarding cost of care, ability to afford medical prescriptions, indirect consequences associated with inability to work and provide for family, and cost burden in nontreatment domains.
Conclusions and Relevance
In this study, among older adults with advanced cancer, FT is associated with worse HRQoL. Almost half of conversations among patients reporting FT demonstrated costs are being actively discussed. Resources and interventions are needed to manage FT.
Financial toxicity (FT) encompasses the monetary burden of paying for cancer care (eg, chemotherapy, surgery) and the negative consequences of such treatments on patients’ financial security.1 Financial toxicity is associated with immediate and long-term consequences including treatment nonadherence, decreased health-related quality of life (HRQoL), bankruptcy, and an increased risk of mortality.1-4 In 2014, cancer care spending reached $87.8 billion in the US, with $3.9 billion in direct spending by patients related to out-of-pocket expenses.5 Older adults (aged ≥70 years) face a unique set of pressures compared with the general population. As of 2020, more than 60% of all individuals with cancer in the US were 65 years or older.6 Furthermore, although 93% of the population of older adults has health care coverage through Medicare, many are left with large copayments and deductible minimums.7 In 2017, older adults spent 13.1% of total expenditures on health care costs.8 The issue of an aging population and increasing cancer prevalence also affects worldwide populations in both high-income and lower-income countries.9 Using population projections, it is estimated that by 2035, new cancer diagnoses in those 65 years and older are expected to increase from 6.7 million to 14 million globally.9
Two major themes have been identified from FT research. First, patients who report FT (on various scales and surveys) are more likely to have a lower HRQoL compared with those with no financial hardship.10,11 For example, in the National Health and Aging Trends Study, which included 307 patients who survived cancer and were 65 years and older, financial burden (based on 6 problems: paying off credit card balances, paying medical bills, receiving financial help from family or friends, receiving food stamps, receiving other food assistance, and receiving assistance with utilities) was associated with higher depressive symptoms, general anxiety, and self-rated health.12 Second, patients express a desire to discuss out-of-pocket costs with their oncologist teams; however, conversations rarely occur during clinic visits, partially because of health care professional discomfort.13,14 To our knowledge, much of the current literature is limited. Many studies have used questions to identify patients with FT that focus on indirect costs of cancer care (eg, travel, lodging, and employment) rather than questions that evaluate the ability of the patient to financially manage their basic needs of living (eg, medicines, food, and clothing), which is more relevant to older adults with limited incomes.10,15,16
In this secondary analysis of a large national clinical trial, we aimed to (1) estimate the prevalence of FT in older patients with advanced cancer enrolled in a clinical trial, (2) examine the association between FT and HRQoL, and (3) describe cost conversations between oncologists and patients with FT. We hypothesized that FT was associated with worse HRQoL.
Study Design, Setting, and Participants
The Improving Communication in Older Cancer Patients and Their Caregivers (COACH) study (NCT02107443) was a cluster randomized clinical trial that enrolled 541 older adults with incurable cancer from 31 community oncology practices in the University of Rochester Cancer Center National Cancer Institute Community Oncology Research Program Research Base network.17-21 Patients were eligible for the primary study if they were 70 years or older, were diagnosed with incurable stage III or IV cancer, were considering or receiving cancer treatment, had at least 1 geriatric assessment (GA) domain impairment (eg, function, cognition) excluding polypharmacy, had an adequate understanding of the English language, and had the ability to provide informed consent or had a health care proxy who could sign consent. This cross-sectional study and the COACH study were approved by the University of Rochester Research Subjects Review Board and the review boards of the participating National Cancer Institute Community Oncology Research Program affiliates. All patients (or health care proxy designees), oncologists, and caregivers provided consent. The total study population had 541 participants, but given that FT data were incomplete for 5 patients, they were removed from the analysis and this substudy included 536 patients. This study followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline for cross-sectional studies as well as the Standards for Reporting Qualitative Research (SRQR) reporting guideline for qualitative studies.
Participants and Brief Description of the Primary Study
Patient-reported sociodemographic characteristics (race, ethnicity, educational level, marital status, insurance type, and annual household income), cancer type, and additional measures are given in Table 1. In practices assigned to the intervention arm, GA-guided recommendations tailored to the patient were provided to the oncology team, the patient, and the caregiver. Geriatric assessment–guided recommendations were not provided in practices assigned to the usual care arm, but the GA was completed in those practices as well. Of note, the GA does not contain information on FT and financial recommendations were not provided in either arm. For all patients, 1 clinic visit between the patient and their oncologist was audio recorded within 4 weeks of enrollment. In this secondary analysis, we used baseline data of the enrolled patients.
Independent Variables and Covariates
Patients were asked 3 questions regarding financial hardship at baseline screening to determine independent variables. The first question (Q1) was, “At any time in the past 3 months have you taken less medication than was prescribed for you because of the cost?” (the delayed medications variable); the second question (Q2) was, “When you think about the amount of income that you have available in a typical month, is there enough for your food and housing costs?” (the income available variable); and the third question (Q3) was, “When you think about the amount of income that you have available in a typical month, is it enough for things you really need like clothing, medicine, repairs to the home or transportation” (the enough income variable). If a patient answered “yes” to Q1 or “no” to Q2 or “no” to Q3, they were categorized as meeting the criteria for FT. The questions included in the survey were selected due to ease of administration and to encompass the current definition of FT in the literature.4 However, this survey was not validated in older adults in prior studies.22,23 Covariates included age, sex, ethnicity, race, educational level, annual household income, employment status, marital status, insurance, cancer type, and cancer stage. Bivariate analysis (χ2 test) was conducted to select covariates with P < .10, then we included these significant covariates in the multivariable regression.
Dependent Variables: Health-Related Quality of Life
Patients completed validated instruments that assessed HRQoL, including the Geriatric Depression Scale (GDS-15),24 Generalized Anxiety Disorder 7-Item Scale (GAD-7),25 National Comprehensive Cancer Network distress thermometer,26 and Functional Assessment of Cancer Therapy-General (FACT-G).27 The GDS-15 is a 15-question tool with scores ranging from 0 to 15, with higher scores indicating greater depression severity. The GAD-7 is a 7-question tool with scores ranging from 0 to 21, with higher scores indicating greater anxiety. The distress thermometer is a visual Likert scale and measures subjective distress rated from 0 (no distress) to 10 (severe distress). The FACT-G measures 4 domains of overall HRQoL: physical well-being, functional well-being, emotional well-being, and social/family well-being, with a total weighted score ranging from 0 to 108, with 108 representing the highest overall HRQoL. Minimally clinically important differences were 1.2 points for the GDS-15, 3 points for the GAD-7, and 5-6 points for FACT-G.28-30 No minimally clinically important differences data exist for the National Comprehensive Cancer Network distress thermometer; however, experts suggest a cutoff point of 3 to identify distress.31
Qualitative Analysis: Cost Conversations
Audio recordings of the clinic visits were transcribed and deidentified. Two independent coders (A.A. and M.W. [neither interacted with the participants]) reviewed transcripts line by line of patients who met criteria for FT. The framework method was employed to identify frequency and to code themes related to cost conversations.32 The framework method is a means to organize, manage, and present research data through the process of summarization, and uses a matrix output of rows and columns in which rows represent cases and columns represent concepts. Themes were coded until thematic saturation was achieved (no additional codes identified), from which 4 themes were identified.33 Additional codes were developed to determine the party (patient, oncologist, or caregiver) who initiated cost conversation and the response quality by the health care professional. Response quality was categorized as acknowledged, addressed, or dismissed.17 The category acknowledged was used when the health care professional offered any verbal cue indicating the patient/caregiver concern was heard. The addressed category was used when the health care professional attempted to offer any intervention to ameliorate FT (eg, providing free medication samples). The dismissed category was used when the health care professional offered no verbal cue regarding the concern or pivoted to a separate topic. After coding was completed, the independent coders met to establish consensus. Consensus was achieved between the 2 coders; therefore, there was no third party to address discrepancies.
For the first aim, we described the characteristics of our study sample and prevalence of FT (mean [SD] or number [%]) and compared the characteristics for patients who met criteria for FT vs those who did not using the χ2 test of independence.
For the second aim, we first examined the bivariate associations between clinically important covariates (age, sex, ethnicity, race, educational level, annual household income, employment status, marital status, cancer type, and cancer stage) and FT using χ2 test of independence. The covariates that were associated with a P < .10 were considered as potential confounders of association between FT and HRQoL.34 We then conducted separate multivariate linear regressions to evaluate the associations of FT with HRQoL, adjusted for covariates associated with P < .10. Additionally, we explored separate associations of Q1, Q2, and Q3 with HRQoL. Likelihood ratio tests from linear mixed models with practice site as random effects were not significant for all outcomes, suggesting a limited clustering effect of practice site; therefore, the results from the original multivariable models were presented. Such modeling techniques follow a similar analytical strategy to previous work.19 Residual plots were examined for normality, and although some deviations were present, all the model assumptions held well. A nonparametric sensitivity analysis was conducted, and all associations between FT and outcome measures remained significant (P < .01). Statistical significance was set a 2-tailed P < .05. All analyses were conducted using R software version 3.5.2 (R Project for Statistical Computing).
For the third aim on conversations, we used a binary categorization for whether discussions of FT occurred during the clinical encounter and then sought to generate themes. The Cohen κ measure of interrater reliability was calculated to measure the agreement between the coders’ categorizations.
Characteristics of the Sample
Among 536 patients (mean age, 76.6 years [range, 70-96], 262 [48.9%] female, 499 [93.1%] unemployed or retired, 39 [7.3%] Black/African American, and 101 [18.8%] with Medicare insurance alone), 18.3% (98 patients) reported FT. Patients experiencing FT had a mean (SD) age of 76.4 (5.4) years; 59 (60.2%) were female; 91 (92.9%) were unemployed or retired; 14 (14.3%) were Black/African American; and 29 (29.6%) were covered by Medicare insurance alone. Patients not experiencing FT were a mean of 76.6 years (range, 70-96 years), 46.3% female, 93.2% unemployed or retired, 5.7% Black/African American, and 16.4% with Medicare insurance alone. These characteristics suggest that patients who were female, Black/African American, single, with lower income and educational level, and covered by Medicare alone were more likely to report FT (all P < .05) (Table 1). Nineteen patients responded yes to Q1; 41 to Q2; and 89 to Q3. The number of patients adds up to greater than 98 because an individual patient may have responded “yes” to more than 1 question.
Associations of Financial Toxicity With Health-Related Quality of Life
Compared with patients without FT, patients who reported FT were more likely to report higher levels of depression (mean GDS-15: 3.83 vs 2.93, P = .01), anxiety (mean GAD-7: 4.24 vs 2.58, P = .001), and distress (mean distress: 3.55 vs 2.75, P = .01), and lower overall HRQoL (mean FACT-G: 75.40 vs 81.78, P < .001). In multivariate regression analyses, FT was associated with higher levels of depression, anxiety, and distress, as well as lower overall HRQoL. Patients reporting FT scored a mean of 0.81 points (95% CI, 0.15-1.48 points) higher on the GDS-15 (indicating greater depression severity), 1.67 points (95% CI, 0.74-2.61 points) higher on the GAD-7 (indicating greater anxiety severity), and 0.73 points (95% CI, 0.08-1.39 points) higher on the distress thermometer (indicating greater distress) (Table 2). Patients reported 5.30 points (95% CI, –8.92 to –1.69 points) lower on the FACT-G (indicating lower overall HRQoL), a result that is clinically significant (Table 2).
In exploratory analyses, each of the 3 individual FT measures was associated with lower HRQoL in separate multivariate models. Patients who delayed medications due to FT scored a mean of 1.48 points (95% CI, 0.15-2.82 points) higher on the GDS-15, 1.57 points (95% CI, 0.36-3.50 points) higher on the GAD-7, 2.02 points (95% CI, 0.70-3.33 points) higher on the distress thermometer, and 6.70 points (95% CI, –13.84 to –0.44 points) lower on the FACT-G. Patients who reported insufficient income in a typical month for food or housing scored a mean of 1.70 points (95% CI, 2.73-4.83 points) higher on the GDS-15, 1.74 points (95% CI, 0.42-3.05 points) higher on the GAD-7, 1.10 points (95% CI, 0.19-2.01 points) higher on the distress thermometer, and 4.33 points (95% CI, –9.40 to 0.75 points) lower on the FACT-G. In addition, patients who reported insufficient income in a typical month for clothing, medicine, repairs to the home, or transportation scored a mean of 0.93 points (95% CI, 0.24-1.10 points) higher on the GDS, 1.73 points (95% CI, 0.75-2.71 points) higher on the GAD-7, 0.81 points (95% CI, 0.13-1.49 points) higher on the distress thermometer, and 6.13 points (95% CI, –9.87 to –2.38 points) lower on the FACT-G (eTable 1, eTable 2, and eTable 3 in the Supplement).
Of the 98 patients who reported FT, 94 had transcripts available to review (no audio recordings were available for 4 patients). Among these 94 transcripts, 46 (48.9%) contained 1 or more conversation relating to cost, with a total of 63 distinct conversations. Conversations were initiated by oncologists (26 of 63 [41.3%]), patients (24 of 63 [38.1%]), caregivers (10 of 63 [15.9%]), and nurses (3 of 63 [4.8%]). Most conversations (79%) were initiated by oncologist or patients.
Four main themes emerged from the cost conversations. The first theme included statements regarding cost of care (medications and medical equipment), and was found in 31 of 63 (49.2%) conversations. These were primarily patient and caregiver initiated (18 of 31 [58.1%]). The second theme focused on the ability to afford prescribed care and was seen in 9 of 63 (14.3%) discussions. In contrast with the other themes, these discussions were initiated by oncologists (8 of 9 [88.8%]). The third theme focused on the indirect consequences associated with ability to work or provide for family and was present in 9 of 63 (14.3%) conversations. These were primarily patient and caregiver initiated (7 of 9 [77.8%]). The fourth theme centered around cost burden in nontreatment domains including transportation, food, and supplements, and was identified in 14 of 63 (22.2%) discussions. These were primarily patient-initiated conversations (8 of 14 [57.1%]). Direct statements from participants regarding the 4 themes are presented in Table 3.
We also analyzed the oncologist response to cost concerns of patients or caregivers and determined whether concerns were acknowledged (explored by the oncologist) and/or addressed (with specific recommendations made). Of the 34 conversations initiated by patients or caregivers, oncologists acknowledged cost concerns in 47.1%, addressed them in 41.2%, and dismissed them in 11.8% of discussions. When oncologists did address financial issues, they recommended a variety of interventions including offering medication samples, enrolling patients in patient assistance programs, and connecting families with social workers and financial specialists.
Older adults undergoing cancer care are at risk for FT. This study estimated the prevalence of FT among older adults with advanced cancer, assessed the association between FT and HRQoL for this population, and highlighted the infrequency with which cost conversations are brought up at health care professional visits.
Although there are FT screening tools currently accepted for use,24-27,35 they require basic familiarity with the instrument as well as time to administer during a patient visit. The most commonly used tool is the Comprehensive Score for Financial Toxicity–Functional Assessment of Chronic Illness Therapy (COST- FACIT).35 We used a 3-question screen for FT for ease of recall, administration, and efficiency. Our tool may effectively identify vulnerable older adults at risk for FT during cancer treatment, similar to other FT screens (eg, COST- FACIT tool) currently available.35,36 All 3 questions are dichotomous, and the screening tool does not require specialized training for administration. Furthermore, these questions serve as a quick tool to identify FT for oncologists who do not feel equipped to engage in cost conversations with patients or feel visit times do not permit for lengthy screening tools such as the COST- FACIT tool.35,36
Our results indicated that almost 20% of older adults with advanced cancer experience FT. Most of these patients were 70 years or older, were female, had at least a college education, had lower household income, and were not employed. From our analysis, we saw differences between the patients with FT and patients without FT on all 4 dependent measures (GDS-15, GAD-7, distress, and FACT-G). Further, we noted that on average individuals experiencing FT had higher GDS-15, GAD-7, and DT scores, indicating more depression, anxiety, and distress, and experienced an overall lower HRQoL compared with patients without FT. We also found there to be a minimal clinically important difference for FACT-G, indicating that the individuals exhibiting FT were experiencing an overall clinically significantly worse HRQoL. Statistical significance is important and study of clinical differences may also have utility. By using the 3 questions on FT, health care professionals can quickly identify the most vulnerable patients at the greatest risk for experiencing overall lower HRQoL.
The American Society of Clinical Oncology 2009 guidance statement suggests that high-quality care should include communication from health care professionals to patients regarding costs.37 However, cost conversations are infrequently brought up by the oncologist even though as many as 80% of patients expressed wanting a conversation regarding finances with their oncologist.36,37 Our study found that during visits among those who reported FT, only 49% of patients with FT had some mention of costs and most conversations (79%) were initiated by oncologists or patients, indicating a potential gap between patient desires and practice. Based on our results, discussions for themes of statements about cost of care, indirect consequences associated with the inability to work, and cost burden in nontreatment domains are more likely to be initiated by the patient or caregiver. Patients and oncologists may be reluctant to bring up costs for a variety of reasons. Patients may feel ashamed or embarrassed discussing personal finances and oncologists may not feel equipped to handle or comfortable with these conversations.38,39 Although other studies36,38,39 have examined the desire for oncology patients to have conversations related to cost with their health care professional, our study is one of the first to analyze transcript records to identify the frequency and themes directly related to costs from oncology visits in older adults.
Although having cost conversations is important, it is critical to understand and use interventions to assist patients. It is important to note that direct discussion regarding price awareness and inclusion of cost in a treatment and goals of care discussion may have utility in addressing FT.40 Other local resources can include patient navigators, social workers, financial counselors, support groups, transportation vouchers, and co-pay assistance.41 Interventions regarding FT will also be needed with appropriate stakeholders for changes in policy.41
In our analysis, when concerns were addressed, patients were referred to social workers, financial specialists, and medication assistance programs. Most institutions and practices have their own set of resources allocated to help patients through financial difficulties. One barrier for use of the programs is difficulty in assessing FT. If FT is not assessed, referral to appropriate services cannot occur. The 3-question FT survey is a useful strategy to identify and address high-risk populations and may help to allocate resources to those at risk. Future studies should evaluate if interventions addressing FT will improve HRQoL and cancer care outcomes. In addition, future studies may look at FT throughout an individual’s cancer care continuum.
We believe the major strength of this study is its novel approach of examining FT through mixed methods (quantitative and qualitative) in older adults with advanced cancer. To the best of our knowledge, this is the first study that focused on older adults with varying cancer subtypes in the community oncology setting and incorporated observations of cost conversations during clinic visits. Furthermore, neither the intervention nor control arm was provided with educational information on FT, which might limit potential bias.
This study has limitations. First, the tool used in the present study to screen for FT has not been validated and was used because of ease of administration. Although the 3 questions are not validated, we believe that the qualitative results provide an understanding that these questions may elucidate FT. Future research comparing other measures such as the Patient Satisfaction Questionnaire Short Form in older adults with advanced cancer are warranted.42 Second, only transcripts of those deemed to meet criteria for FT and not the whole study population were reviewed for cost conversations. Third, 1 visit was audio recorded for each patient, and this single recording may limit conclusions based on conversations regarding FT that may be evolving. Fourth, we included primarily White patients, half of whom had at least some college education. Therefore, our findings may not be generalizable to non-White patients. Fifth, patients were at varying points in treatment (some had not started and others were at the end of their treatment course), which could affect the amount the patient had already spent on treatment and indirect costs, and this may affect reporting of FT. Sixth, the cross-sectional design is not able to determine causality of the findings. Seventh, we do not know what proportion of patients had cost conversations that did not report FT as our study only examined those who met criteria for FT. In addition, because the primary study only included patients with stage III or IV incurable cancer, our findings may not apply to patients with early stage cancer.
Older adults with cancer may be at a higher risk for financial toxicity compared with those undergoing treatments for other chronic conditions.43 This finding warrants future collaboration and research to create interventions to help reduce this burden. First, we must understand the prevalence of the situation. The present study reported FT prevalence among older patients enrolled in a clinical trial receiving cancer treatments and described the negative associations of FT with HRQoL. Additionally, our study highlights the prevalence of cost conversations among patients experiencing FT and advocates for health care professionals to engage patients and their families in these direct conversations. Second, we must provide an efficient screening tool to localize patients at high risk for FT. We suggest that health care professionals implement a screening tool such as our 3-question survey to broach the topic of FT among older patients. Ultimately, an intervention may need to be implemented to help those at risk avoid FT from ever developing. Future directions of study may include validation of our 3-question tool, and eventually a multi-institutional collaborative effort to hypothesize and implement strategies to decrease the chance of FT developing.
Accepted for Publication: September 13, 2020.
Published: December 7, 2020. doi:10.1001/jamanetworkopen.2020.25810
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Arastu A et al. JAMA Network Open.
Corresponding Author: Arpan Patel, MD, James P Wilmot Cancer Institute, University of Rochester School of Medicine and Dentistry, 601 Elmwood Ave, Box 704, Rochester, NY 14642 (arpan_patel@urmc.rochester.edu).
Author Contributions: Drs Arastu and Mohile had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Drs Arastu and Patel contributed equally to this article.
Concept and design: Arastu, Mohile, Xu, Dougherty, Kamen.
Acquisition, analysis, or interpretation of data: Arastu, Patel, Mohile, Ciminelli, Kaushik, Wells, Culakova, Lei, Xu, Mohamed, Hill, Duberstein, Flannery, Kamen, Pandya, Berenberg, Aarne Grossman, Liu, Loh.
Drafting of the manuscript: Arastu, Patel, Mohile, Ciminelli, Kaushik, Loh.
Critical revision of the manuscript for important intellectual content: Arastu, Patel, Mohile, Ciminelli, Wells, Culakova, Lei, Xu, Dougherty, Mohamed, Hill, Duberstein, Flannery, Kamen, Pandya, Berenberg, Aarne Grossman, Liu, Loh.
Statistical analysis: Arastu, Patel, Ciminelli, Culakova, Lei, Xu.
Obtained funding: Mohile.
Administrative, technical, or material support: Mohile, Wells, Flannery, Pandya, Liu.
Supervision: Patel, Mohile, Kamen.
Other: Dougherty.
Conflict of Interest Disclosures: Dr Mohile reported grants from the Patient-Centered Outcomes Research Institute (PCORI) and grants from the National Institutes of Health (NIH) during the conduct of the study. Dr Wells reported grants from PCORI during the conduct of the study. Dr Culakova reported grants from the National Cancer Institute (NCI) during the conduct of the study; grants from NCI outside the submitted work. Dr Flannery reported grants from NIH NCI and grants from PCORI during the conduct of the study. Dr Kamen reported grants from the NCI during the conduct of the study. Dr Berenberg reported grants from NCI during the conduct of the study. Dr Loh reported other support from Pfizer and Seattle Genetics outside the submitted work. No other disclosures were reported.
Funding/Support: The work was supported by the Patient-Centered Outcomes Research Institute (PCORI) Program contract 4634 (Dr Mohile), the National Cancer Institute at the National Institutes of Health (UG1 CA189961 and K99CA237744 [Dr Loh]), the National Institute of Aging at the National Institutes of Health (K24 AG056589 and AG059206 [Dr Mohile), and the Wilmot Research Fellowship Award (Dr Loh).
Role of the Funder/Sponsor: The funding organizations had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Meeting Presentations: This paper was presented at the 2018 American Society of Clinical Oncology Supportive Care in Oncology Symposium; September 28, 2018; Phoenix, Arizona; the 2018 International Conference on Communication in Healthcare; September 1, 2018; Porto, Portugal; and the 2018 International Society of Geriatric Oncology Annual Meeting; November 16, 2018; Amsterdam, the Netherlands.
Additional Contributions: We would like to extend our gratitude to the patients, oncologists, and support staff who participated in this study. We also thank the University of Rochester National Cancer Institute Community Oncology Research Base network, members of SCOREboard, and the dedicated support of all members of the Geriatric Oncology research group at the University of Rochester. We also thank the Cancer and Aging Research Group, especially Tanya Wildes, MD (Washington University School of Medicine), Shabbir Alibhai, MD (Toronto General Hospital Research Institute), Tsang Mazie, MD (University of California, San Francisco), and Hira Mian, MD (McMaster University), for their review of the manuscript and feedback.
Additional Information: This work was made possible by the generous donors to the Wilmot Cancer Institute (WCI) geriatric oncology philanthropy fund. All statements in this report, including its findings and conclusions, are solely those of the authors, do not necessarily represent the official views of the funding agencies, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or its Methodology Committee.
1.Carrera
P, Yousuf Zafar
S. Financial toxicity. In: Olver
I, ed. The MASCC Textbook of Cancer Supportive Care and Survivorship. Springer; 2018.
2.Neugut
AI, Subar
M, Wilde
ET,
et al. Association between prescription co-payment amount and compliance with adjuvant hormonal therapy in women with early-stage breast cancer.
J Clin Oncol. 2011;29(18):2534-2542. doi:
10.1200/JCO.2010.33.3179
PubMedGoogle ScholarCrossref 3.Zafar
SY, McNeil
RB, Thomas
CM, Lathan
CS, Ayanian
JZ, Provenzale
D. Population-based assessment of cancer survivors’ financial burden and quality of life: a prospective cohort study.
J Oncol Pract. 2015;11(2):145-150. doi:
10.1200/JOP.2014.001542
PubMedGoogle ScholarCrossref 13.Zafar
SY, Chino
F, Ubel
PA,
et al. The utility of cost discussions between patients with cancer and oncologists.
Am J Manag Care. 2015;21(9):607-615.
PubMedGoogle Scholar 17.Mohile
SG, Epstein
RM, Hurria
A,
et al. Communication with older patients with cancer using geriatric assessment: a cluster-randomized clinical trial from the National Cancer Institute Community Oncology Research Program.
JAMA Oncol. 2020;6(2):196-204. doi:
10.1001/jamaoncol.2019.4728
PubMedGoogle ScholarCrossref 24.Cella
D. The Functional Assessment of Cancer Therapy-Anemia (FACT-An) Scale: a new tool for the assessment of outcomes in cancer anemia and fatigue.
Semin Hematol. 1997;34(3)(suppl 2):13-19.
PubMedGoogle Scholar 25.Sheikh
JI, Yesavage
JA. Geriatric Depression Scale (GDS): recent evidence and development of a shorter version. In: Brink
TL, ed. Clinical Gerontology: A Guide to Assessment and Intervention. The Haworth Press; 1986:165-173.
28.Vinkers
DJ, Gussekloo
J, Stek
ML, Westendorp
RG, Van Der Mast
RC. The 15-item Geriatric Depression Scale (GDS-15) detects changes in depressive symptoms after a major negative life event: The Leiden 85-plus study.
Int J Geriatr Psychiatry. 2004;19(1):80-84. doi:
10.1002/gps.1043
PubMedGoogle ScholarCrossref 33.Ando
H, Cousins
R, Young
C. Achieving saturation in thematic analysis: development and refinement of a codebook.
Compr Psychol. Published online January 1, 2014. doi:
10.2466/03.CP.3.4Google Scholar 35.de Souza
JA, Yap
BJ, Wroblewski
K,
et al. Measuring financial toxicity as a clinically relevant patient-reported outcome: the validation of the COmprehensive Score for financial Toxicity (COST).
Cancer. 2017;123(3):476-484. doi:
10.1002/cncr.30369
PubMedGoogle ScholarCrossref 38.Zafar
SY, Tulsky
JA, Abernethy
AP. It’s time to have ‘the talk’: cost communication and patient-centered care.
Oncology (Williston Park). 2014;28(6):479-480.
PubMedGoogle Scholar 41.Zafar
SY, Newcomer
LN, McCarthy
J, Fuld Nasso
S, Saltz
LB. How should we intervene on the financial toxicity of cancer care? one shot, four perspectives.
Am Soc Clin Oncol Educ Book. 2017;37:35-39. doi:
10.14694/EDBK_174893
PubMedGoogle ScholarCrossref 43.Zafar
SY, Abernethy
AP. Financial toxicity, part I: a new name for a growing problem.
Oncology (Williston Park). 2013;27(2):80-81, 149.
PubMedGoogle Scholar