Identifying levels of financial toxicity and unmet needs in cancer patients receiving financial assistance: Exploring trends in populations lacking adequate resources to overcome healthcare barriers.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 151-151
Author(s):  
Brittnee Barris ◽  
Katie Deehr ◽  
Eric Anderson ◽  
Kathleen D. Gallagher ◽  
Shonta Chambers ◽  
...  

151 Background: The inability to afford healthcare has a widespread effect on cancer patients, notably impacting treatment decisions and outcomes. Patients receiving financial assistance to offset medication costs still face challenges overcoming cost of care barriers. This study investigated sources of concern and financial stress among racial groups and identified solutions to address patients’ needs beyond medication-related costs. Methods: This cross-sectional study utilized secondary survey data collected from cancer patients who received co-payment and/or financial aid from PAF in 2018. Respondents answered questions describing their financial distress and the COmprehensive Score for financial Toxicity (COST) tool (0-44 with lower scores indicating worse toxicity). Descriptive statistics were calculated using means and standard deviations (SD) for continuous variables and frequencies for categorical variables. Two sample t-tests were used for bivariate comparisons between racial groups. Results: Of 494 cancer patients surveyed, 72% were Caucasian, 11% were African American (AA), and 71% indicated a household income of < $48,000. Although this population received financial assistance, cost of medications was still a major barrier to adhering to treatment (59% vs 69%). AA patients reported greater financial burden caused by cost of deductibles/copay/coinsurance (58% vs 50%) and treatment costs not covered by insurance (49% vs 21%). AA patients highly rated day-to-day living expenses as an unmet need (64% vs 40%). COST scores differed significantly between Caucasian (mean 17.7, SD 8.6) and AA cohorts (mean 12.1, SD 8.6; p < .001), driven by the inability to meet monthly expenses at all (35% vs 11%). Of AA, 80% felt they do not have enough money in savings/retirement to cover treatment costs. Overall, the AA cohort reported higher frustration with not being able to work or contribute as much as usual (45% vs 26%). Conclusions: Under-resourced AA cancer patients identify a need for a comprehensive approach to cost of care conversation, to drive better adherence and improved treatment outcomes.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 6555-6555 ◽  
Author(s):  
Lenore Omesi ◽  
Aditi Narayan ◽  
Rebekkah Schear ◽  
Joyce Reinecke ◽  
Jennifer Levine

6555 Background: Fertility preservation (FP) is a critical component of comprehensive adolescent and young adult (AYA) cancer care that is discussed and/or offered to only a fraction of eligible patients. Barriers include lack of insurance coverage making FP prohibitively expensive for many patients. The Sharing Hope program, now known as LIVESTRONG Fertility, was created by Fertile Hope in 2004 and acquired by LIVESTRONG in 2009. LIVESTRONG Fertility provides financial assistance to AYA cancer patients through discounted FP rates and access to free medications through a pharmaceutical company. Our aims were to review demographic characteristics of patients served, identify geographic utilization patterns, and quantify the program’s financial impact. Methods: De-identified records maintained by Fertile Hope/LIVESTRONG from 2004 to 2011 were retrospectively reviewed. Patient population, treating institutions and cost savings/patient were summarized using descriptive statistics. Results: 1171 men and 1319 women were approved for financial assistance between 2004 and 2011. Median age was 24 years (range 12-67) for men and 30 years (range 13-49) for women. The most common diagnoses included testicular cancer (34%) and Hodgkin Lymphoma (HL) (18%) among males and breast cancer (48%), HL (13%) and genitourinary cancers (13%) among females. Applications were received from individuals residing in 49 of the United States, as well as Washington DC and Puerto Rico. The applicants received care from a total of 1,245 cancer centers. For men, $438,711 was saved, averaging $375/patient. For women, $3,904,303 was saved in practitioner cost and $4,665,775 in medication costs averaging $6,497/patient. Conclusions: Financial assistance for FP at the time of a cancer diagnosis for AYAs is a persistent and growing need. Female cancer patients face significantly greater costs to preserve fertility. Further studies are needed to determine the true financial burden to patients and the degree to which lack of financial resources and insurance coverage prevent FP in this population. [Table: see text]


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 104-104
Author(s):  
Nicole Caston ◽  
Courtney Williams ◽  
Alan James Balch ◽  
Kathleen D. Gallagher ◽  
Gabrielle Betty Rocque

104 Background: Under-resourced patients with cancer often face financial burdens due, not only to costs of treatment, but also from side effects that prevent individuals’ ability to work, which impact employment status and may cause insurance coverage loss. Financial assistance may be sought from safety net programs, which provide both material support and financial counseling. However, knowledge of the impact of cancer on employment and insurance in a population seeking safety net services is limited. Methods: This observational, cross-sectional study uses data on safety net services from a nationwide survey conducted in July 2017 and distributed by the Patient Advocate Foundation (PAF). The survey respondents included patients with cancer who received services from PAF from July 2016 to June 2017. Descriptive statistics were calculated using frequencies for categorical variables. Results: A total of 508 patients with cancer completed the survey. Most patients had a diagnosis of breast cancer (47%), followed by myeloma (13%), and prostate cancer (8%). The majority of patients reported that their illness affected their employment (67%); by either job loss (13%), income loss (24%), or inability to work as usual (27%). Of these patients, 27% lost their insurance coverage. Those able to enroll in a new insurance plan reported having more expensive rates (40%) and fewer covered services (36%) compared to their previous coverage. The most commonly utilized governmental safety net services were Social Security Disability Insurance (19%) and Medicaid (12%). Non-governmental safety net services such as financial assistance from non-profits (27%) and free medication from drug companies (13%) were also frequently used. Beyond their insurance coverage, cancer patients still needed assistance paying for diagnostic tests (18%), clinic visit fees (23%), and prescription drugs (15%) from the safety net program. Conclusions: Cancer patients commonly experience financial burden due to losses in employment and insurance, resulting in need for safety net programs. Further work is needed to identify approaches to reducing the adverse financial impact of cancer care.


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 156-156
Author(s):  
Kathleen D. Gallagher ◽  
Brittnee Barris ◽  
Eric Anderson ◽  
Katie Deehr ◽  
Shonta Chambers ◽  
...  

156 Background: Patients with cancer struggle to afford needed medical care alongside daily financial obligations due to rising healthcare costs. This may be more pronounced among minorities who are less likely to seek resources to mitigate their financial distress. This study sought to identify racial differences in non-treatment costs for under-resourced women with breast cancer who sought assistance from Patient Advocate Foundation (PAF). Methods: This cross-sectional study utilized secondary survey data collected from breast cancer patients receiving case management services from PAF in 2018. Respondents answered questions describing their financial distress and COmprehensive Score for financial Toxicity (COST) tool (0-44 with lower scores indicating worse toxicity). Descriptive statistics were calculated using means and standard deviations (SD) for continuous variables and frequencies for categorical variables. Two sample t-tests were used for bivariate comparisons between racial groups. Results: Of 267 breast cancer patients surveyed, 54% were Caucasian, 29% were African American (AA), and 83% indicated a household income of < $48,000. Cohorts expressed strong dissatisfaction with their financial situation with AA impacted more acutely (78% vs 56%) and acknowledged inability to pay for treatment costs (83% vs 58%). Compared to Caucasians, AAs were more often concerned with transportation costs (33% vs 16%) and with day-to-day living expenses (83% vs 59%). Younger (≤55 years) AA respondents were twice as often unable to meet monthly expenses (60% vs. 27%). Older AA respondents ( > 55 years) reported greater distress than older Caucasians (74% vs 57%), while younger Caucasians reported greater distress than their AA counterparts (72% vs 65%). COST scores differed significantly between Caucasians (mean 13, SD 9) and AAs (mean 11, SD 8; p = 0.04). Conclusions: While the impacts of medical care costs were felt by all survey respondents, under-resourced AA breast cancer patients may be at higher risk for household material hardships as financial resources are diverted toward essential healthcare costs.


2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e18342-e18342
Author(s):  
Meera Vimala Ragavan ◽  
Divya Ahuja Parikh ◽  
Manali I. Patel

e18342 Background: Few studies have evaluated the perspectives and clinical practices of oncology providers in regards to assisting patients with financial toxicity. Our study sought to assess providers’ attitudes regarding their role in addressing patients’ financial concerns, understand practice patterns in discussing cost of care, and obtain feedback on potential interventions to help address existing barriers. Methods: We developed an 18-question electronic, anonymous survey informed by an extensive literature search and piloted with three physicians with health services research experience. We emailed the survey to 75 attending physicians in Medical Oncology, Hematology, and Radiation Oncology, 117 advance practice practitioners (APPs) and 46 trainees. Responses during the study period 12/12/2018-1/31/2019 were analyzed. Results: A total of 71 (response rate of 30%) participants completed the survey, including 31 attending physicians, 28 APPs, and 12 trainees. Sixty-two percent of participants agreed that oncology providers should openly discuss cost of care with patients. There was wide variation in opinion around whether providers should offer the same treatment recommendations to all patients regardless of cost, with one third stating they agreed, one third stating they disagreed, and one third stating they were neutral. Sixty-one percent of participants did not use any cost-effectiveness tools in decision making. Sixty-three percent of respondents stated that a gap in knowledge of out of pocket costs was the number one barrier to helping patients avoid financial toxicity. The highest ranked intervention of those listed was a guide on available resources for patients with financial needs, voted for by 70% of respondents. Conclusions: Providers identified many barriers at our institution to discussing cost of care, including lack of transparency of out of pocket costs and lack of awareness of available resources. Providers were overwhelmingly interested in incorporating institutional resources and cost-effectiveness tools into their clinical practices. These findings can inform provider-level interventions to better address the financial burden patients face with their cancer care.


2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e18383-e18383
Author(s):  
Ryan Huey ◽  
Goldy George ◽  
Penny Phillips ◽  
Revenda White ◽  
Siqing Fu ◽  
...  

e18383 Background: Clinical trials are an important therapeutic option for cancer patients. Although financial burden in cancer treatment is well-described, the financial burden associated with clinical trials is not well understood, especially for patients with lower socioeconomic status. Methods: We conducted a survey regarding economic burden and financial toxicity among cancer patients on Phase I clinical trials for at least 1 month. Financial Toxicity Score (FTS) was assessed using the validated COmprehensive Score for Financial Toxicity (COST) survey (scale 0-44, lower scores indicating worse financial toxicity). Patients also reported monthly out of pocket (OOP) medical and non-medical expenses. Results: Of 147 consecutive patients approached, 105 agreed to participate; median age = 60y; 62% female; 49% had annual income < $60K; 50% lived < 300 miles from the clinic; 34% required air travel; 41% had Medicare, 50% had employer sponsored insurance. Median FTS = 20, with interquartile range of 12.5. Median monthly OOP costs for non-medical expenses was $985, and for medical expenses was $475. Median total monthly OOP costs was $1695. Compared to patients in the highest quartile of FTS, a significantly lower % of patients in the lowest (worst) quartile of FTS had incomes > $60K (27% v. 77%, P < 0.001), and a significantly higher % were unemployed or not working outside the home (54% v. 12%, P = 0.001), and incurred higher than expected medical (39% vs. 12%, P = 0.025) and non-medical (64% vs. 15%, P = 0.003) expenses. Compared with patients for whom medical costs were not much higher than expected, a significantly higher % of patients with medical costs much higher than expected were non-White (77% v. 46%, P = 0.004) and unemployed/not working outside the home (46% v. 19%, P = 0.009). Conclusions: Among cancer patients participating on clinical trials, economic burden is high and financial toxicity is disproportionally higher in patients with lower income. OOP costs can be substantial and are often unexpected for patients.


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 174-174
Author(s):  
Jordan Steelquist ◽  
Kate Watabayashi ◽  
Karen Overstreet ◽  
Tony Leahy ◽  
Alan James Balch ◽  
...  

174 Background: Few studies have reported on interventions to alleviate financial toxicity (FT) in cancer patients (pts) and informal caregivers (cgs). We developed a financial navigation program in collaboration with Consumer Education and Training Services (CENTS), Patient Advocate Foundation (PAF), and Family Reach Foundation (FRF), to offer financial coaching, insurance navigation, and assistance with unpaid non-medical bills. We conducted a pilot study to assess feasibility of enrolling cgs with pts and to describe the assistance provided. Methods: Pts with any stage solid tumor actively receiving treatment (tx) at the Seattle Cancer Care Alliance were asked to identify a cg who could participate. Pts or pt/cg dyads received an online financial education course and monthly contact for 6 months (mo) with CENTS and PAF. Subjects were referred to FRF for assistance in paying non-medical bills. We describe pt and cg characteristics, and assistance provided by the program. Results: Of 54 pts approached, 30 (median age 59.5, 61% white, 97% stage III/IV disease) were consented. Most pts (53%) had income ≤ $25,000, and all were insured (48% commercial, 28% Medicare, 21% Medicaid). 18 cgs (67% spouse/partner) were consented. At consent, 55% of pts reported debt in the prior 3 mo. Mean score using the COST PRO FT measure (range 0-44, lower score = higher FT) was 17.4 at baseline. After pts’ physical health, out-of-pocket costs were the most stressful aspects of tx for cgs. Cgs with high financial burden from caregiving more often reported taking on new debt, dipping into retirement accounts, or changing their jobs or hours. CENTS coaches assisted with budgeting, updating wills, and employment rights counsel. PAF case managers assisted with financial assistance for drugs, cost of living (e.g. transportation), disability applications, and secured $6,950 in debt relief. FRF dispersed $4,133, primarily for housing expenses. Conclusions: Implementing a financial navigation program that engages both pts and cgs is feasible. This lower income, financially stressed population received $11,000 in financial assistance. Future work will focus on evaluating the impact of this program on financial and psychosocial outcomes in pts and cgs.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e24197-e24197
Author(s):  
Lauren M. Hamel ◽  
David W. Dougherty ◽  
Theresa A. Hastert ◽  
Erlene Kuizon Seymour ◽  
Seongho Kim ◽  
...  

e24197 Background: Financial toxicity, the burden of treatment cost, affects 30-50% of people with cancer in the United States. Although experts recommend patients and oncologists discuss treatment cost to identify patients who need assistance, cost discussions occur in fewer than half of cancer treatment discussions. We pilot-tested the feasibility and efficacy of the Discussions of Cost (DISCO) App, a patient communication intervention designed to improve cost discussions and other financial toxicity-related outcomes during and following oncology treatment consultations. The DISCO App provides an individualized list of cost-related questions patients can ask their oncologist, specific to a patient’s economic situation. Methods: While waiting to see their oncologist, newly diagnosed patients with breast or lung cancer (n=32) used the DISCO App on an iPad. Clinic visits were videorecorded and patients completed pre- and post-intervention measures of self-efficacy for managing treatment costs, self-efficacy for interacting with oncologists, cost-related distress, and perceptions of the DISCO App. A trained coder observed the recordings to determine the presence of a cost discussion, the cost-related topic, and any emergent factors. Results: Findings showed increases in patients’ self-efficacy for managing treatment costs (p=.02) and interacting with oncologists (p=.001). Cost-related distress decreased but not significantly (p=.20). Patients reported the DISCO App was understandable (M=4.5 out of 5), useful as they talked with their oncologist (M=4.0), and 84% of patients reported needing less than 15 minutes to use the DISCO App. Most (94%) interactions were videorecorded (in two cases technical difficulties prevented videos from being collected); all (100%) of the videorecorded interactions included a cost discussion. The most frequently discussed topics were: insurance, time off from work, and financial navigation. Frequently, the oncologist asked the patient for his/her question list and discussed/answered the questions. Conclusions: Findings suggest the DISCO App is feasible to implement in the clinic and effective in improving patient-oncologist cost discussions and financial toxicity-related outcomes. Patient acceptance of the DISCO App and oncologist engagement suggested the intervention prompted cost discussions. Next steps include conducting a longitudinal randomized controlled trial to determine the effectiveness of the DISCO App on financial toxicity, and other outcomes. Clinical trial information: NCT03676920 .


2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
S L Schröder ◽  
N Schumann ◽  
M Richter

Abstract Background Financial toxicity was hardly examined in the context of public health. It is proven that financial distress following a cancer diagnosis can have an impact on the quality of life and mortality. Additionally, it was found that subjective indicators of financial toxicity have a stronger effect than objective indicators. Nevertheless, less is known about how higher costs can impact on the individual patient’s well-being. The aim of this study was to analyse the major drivers that lead from financial consequences to subjective financial distress in a country with statutory health insurance. Methods Qualitative semi-structured interviews were conducted with 39 cancer patients, aged between 40 and 86 years, in Germany. Inductive content analysis of data was performed and the individual patient's pathways are recently compared and contrasted. Results Above all, we found that financial distress is not only induced by higher costs and lower available money. Moreover, independently of whether patients experienced any financial decline, they experienced making financial adjustments and feeling financially stressed. The preliminary results show that the patient's ability of good money management and trust in one’s own skills being able to get along with less money might predict psychosocial consequences. Conclusions Screening instruments for financial toxicity are important to effectively detect patients whose quality of life might be worsened by their financial situation. It might be that rather financial skills than the amount of costs are important indicators of financial distress. Key messages Even cancer patients experiencing almost no financial decline during the period of cancer treatment might experience lower quality of life caused by financial distress. The ability and trust in oneself money management might have the strongest impact on subjective financial stress.


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 8-8
Author(s):  
Ryan Huey ◽  
Goldy George ◽  
Penny Phillips ◽  
Revenda White ◽  
Siqing Fu ◽  
...  

8 Background: Clinical trials are an important therapeutic option for cancer patients. Although financial burden in cancer treatment is well-described, the financial burden associated with clinical trials is not well understood, especially for patients with lower socioeconomic status. Methods: We conducted a survey regarding economic burden and financial toxicity among cancer patients on Phase I clinical trials for at least 1 month. Financial Toxicity Score (FTS) was assessed using the validated COmprehensive Score for Financial Toxicity (COST) survey (scale 0-44, lower scores indicating worse financial toxicity). Patients also reported monthly out of pocket (OOP) medical and non-medical expenses. Results: Of 147 consecutive patients approached, 105 agreed to participate; median age = 60y; 62% female; 49% had annual income < $60K; 50% lived < 300 miles from the clinic; 34% required air travel; 41% had Medicare, 50% had employer sponsored insurance. Median FTS = 20, with interquartile range of 12.5. Median monthly OOP costs for non-medical expenses was $985, and for medical expenses was $475. Median total monthly OOP costs was $1695. Compared to patients in the highest quartile of FTS, a significantly lower % of patients in the lowest (worst) quartile of FTS had incomes > $60K (27% v. 77%, P < 0.001), and a significantly higher % were unemployed or not working outside the home (54% v. 12%, P = 0.001), and incurred higher than expected medical (39% vs. 12%, P = 0.025) and non-medical (64% vs. 15%, P = 0.003) expenses. Compared with patients for whom medical costs were not much higher than expected, a significantly higher % of patients with medical costs much higher than expected were non-White (77% v. 46%, P = 0.004) and unemployed/not working outside the home (46% v. 19%, P = 0.009). Conclusions: Among cancer patients participating on clinical trials, economic burden is high and financial toxicity is disproportionally higher in patients with lower income. OOP costs can be substantial and are often unexpected for patients.


2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 64-64
Author(s):  
Margaret Irene Liang ◽  
Janice Leahgrace Simons ◽  
Ivan I. Herbey ◽  
Jaclyn Wall ◽  
Lindsay Rucker ◽  
...  

64 Background: Our aim was to obtain ovarian cancer patients’ perspective on accessing financial assistance programs. Methods: We recruited ovarian cancer patients receiving systemic therapy who screened positive for financial distress using Comprehensive Score for Financial Toxicity <26. Two interviewers conducted 45-minute interviews on the costs of care, which were recorded and transcribed. Three coders used inductive thematic analysis to identify themes. Results: There were 18 of 22 interviews currently evaluable. Median age was 57 and 68% of participants reported income <$40,000. Facilitators and barriers to accessing financial assistance are shown in the table below. Conclusions: Patients’ reliance on existing support systems and cancer organizations highlight a need for health systems to leverage these relationships and improve organized efforts to provide information related to financial assistance. Proactively asking about financial needs and providing resources to all patients, regardless of income, may mitigate patient reported barriers to accessing financial assistance. [Table: see text]


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