scholarly journals A Pilot Study of a Comprehensive Financial Navigation Program in Patients With Cancer and Caregivers

2020 ◽  
Vol 18 (10) ◽  
pp. 1366-1373
Author(s):  
Kate Watabayashi ◽  
Jordan Steelquist ◽  
Karen A. Overstreet ◽  
Anthony Leahy ◽  
Erin Bradshaw ◽  
...  

Background: Few studies have engaged patients and caregivers in interventions to alleviate financial hardship. We collaborated with Consumer Education and Training Services (CENTS), Patient Advocate Foundation (PAF), and Family Reach (FR) to assess the feasibility of enrolling patient–caregiver dyads in a program that provides financial counseling, insurance navigation, and assistance with medical and cost of living expenses. Methods: Patients with solid tumors aged ≥18 years and their primary caregiver received a financial education video, monthly contact with a CENTS counselor and PAF case manager for 6 months, and referral to FR for help with unpaid cost of living bills (eg, transportation or housing). Patient financial hardship and caregiver burden were measured using the Comprehensive Score for Financial Toxicity–Patient-Reported Outcomes (COST-PRO) and Caregiver Strain Index (CSI) measures, respectively, at baseline and follow-up. Results: Thirty patients (median age, 59.5 years; 40% commercially insured) and 18 caregivers (67% spouses) consented (78% dyad participation rate). Many participants faced cancer-related financial hardships prior to enrollment, such as work change or loss (45% of patients; 39% of caregivers) and debt (64% of patients); 39% of caregivers reported high levels of financial burden at enrollment. Subjects received $11,000 in assistance (mean, $772 per household); 66% of subjects with income ≤$50,000 received cost-of-living assistance. COST-PRO and CSI scores did not change significantly. Conclusions: Patient–caregiver dyads were willing to participate in a financial navigation program that addresses various financial issues, particularly cost of living expenses in lower income participants. Future work should address financial concerns at diagnosis and determine whether doing so improves patient and caregiver outcomes.

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.


2018 ◽  
Vol 14 (2) ◽  
pp. e122-e129 ◽  
Author(s):  
Veena Shankaran ◽  
Tony Leahy ◽  
Jordan Steelquist ◽  
Kate Watabayashi ◽  
Hannah Linden ◽  
...  

Background: Few studies have reported on interventions to alleviate financial toxicity in patients with cancer. We developed a financial navigation program in collaboration with our partners, Consumer Education and Training Services (CENTS) and Patient Advocate Foundation (PAF), to improve patient knowledge about treatment costs, provide financial counseling, and to help manage out-of-pocket expenses. We conducted a pilot study to assess the feasibility and impact of this program. Methods: Patients with cancer received a financial education course followed by monthly contact with a CENTS financial counselor and a PAF case manager for 6 months. We measured program adherence, self-reported financial burden and anxiety, program satisfaction, and type of assistance provided. Results: Thirty-four patients (median age, 60.5 years) were consented (85% white and 50% commercially insured). Debt, income declines, and loans were reported by 55%, 55%, and 30% of patients, respectively. CENTS counselors assisted most often with budgeting, retirement planning, and medical bill questions. PAF case managers assisted with applications for appropriate insurance coverage, cost of living issues (eg, housing, transportation), and disability applications. High financial burden and anxiety about costs (4 or 5 on a Likert scale) were reported at baseline by 37% and 47% of patients, respectively. Anxiety about costs decreased over time in 33% of patients, whereas self-reported financial burden did not substantially change. Conclusion: Implementing an oncology financial navigation program is feasible, provides concrete assistance in navigating the cost of care, and mitigates anxiety about costs in a subset of patients. Future work will focus on measuring the program’s impact on financial and clinical outcomes.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 7080-7080
Author(s):  
Emeline Aviki ◽  
Fumiko Chino ◽  
Julia Ramirez ◽  
Victoria Susana Blinder ◽  
Jennifer Jean Mueller ◽  
...  

7080 Background: Awareness of cancer patients’ financial toxicity (FT) has increased substantially over the past decade; however, interventions to minimize financial burden remain underdeveloped and understudied. This survey-based study explores patient beliefs on which potential mitigating strategies could improve their financial hardship during cancer treatment. Methods: Interviewer-administered surveys were conducted with consecutive patients in an outpatient, urban, private academic Gynecologic Cancer clinic waiting room for 2 weeks in August 2019. The survey items included patient demographics, disease characteristics, the Comprehensive Score for Financial Toxicity (COST) tool (validated measure of FT with score 0-44; lower scores indicate worse FT), assessment of cost-coping strategies, and patient-reported anticipated benefit from described potential interventions (items that were feasible and relevant to implement in clinic). Results: Of 101 patients who initiated the survey, 87 (86%) completed it and were included in this analysis. The median age was 66 (range, 32-87). Thirty-eight patients (44%) had ovarian, 29 (33%) uterine, 5 (6%) cervical, and 15 (17%) an “other” gynecologic cancer. The median COST score was 32 (range, 6-44). Twenty-nine patients (33%) had COST scores ≤25 and 16 (18%) had COST scores ≤18. The most frequent cost-coping strategy reported was reducing leisure activities (n = 36, 41%) and using savings to pay for medical bills (n = 34, 39%). Six patients (7%) reported not taking a prescribed medication in the past 12 months due to the inability to pay and 0 reported skipping a recommended imaging study. When it came to interventions patients anticipated would improve their current financial hardships, 34 (39%) indicated access to transportation assistance to and from appointments, 31 (36%) said “knowing up front how much I’m going to have to pay for my healthcare”, 29 (33%) indicated “minimizing wait time associated with appointments, which keeps me away from work”, and 22 (25%) indicated “access to free food during/around appointments and treatments”. Only 26 (30%) noted they were not experiencing financial hardship. Conclusions: For an outpatient population of gynecologic cancer patients, several focused, feasible interventions could be implemented to potentially decrease patient FT. Our study can help health care providers in the design of interventions to create meaningful improvements in patient financial burden. Next steps should assess the impact of targeted interventions on patient outcomes.


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e18079-e18079
Author(s):  
Veena Shankaran ◽  
Tony Leahy ◽  
Jordan Steelquist ◽  
Kate Watabayashi ◽  
Erin Singleton ◽  
...  

e18079 Background: Although financial toxicity is associated with poorer clinical outcomes in cancer survivors, few studies have attempted to address this toxicity. We developed a financial navigation program in collaboration with our partners (Consumer Education and Training Services (CENTS) and Patient Advocate Foundation (PAF)) to improve patients’ knowledge about cancer treatment costs, provide financial counseling, and help with out-of-pocket expenses. We conducted a pilot study to assess feasibility and early impact of this program. Methods: Patients (pts) within 1 year of a solid tumor diagnosis and 6 months of chemotherapy and/or radiation were recruited at the Seattle Cancer Care Alliance. Pts received a financial education course followed by monthly contact with a CENTS financial counselor and PAF case manager for 6 months. We measured program adherence, self-reported financial burden, anxiety about costs, program satisfaction, and type and amount of assistance provided. Results: We consented 34 pts (median age 60.5), the majority of whom were white (85%) and commercially insured (50%). Participants (n = 20) and non-participants (n = 14 who withdrew or were lost to follow up early on) did not differ in age, race, gender, education, income, or insurance type. Debt, income declines, and loans were reported by 55%, 55%, and 30% of pts. High financial burden and anxiety about costs (4 or 5; Likert scale) were reported by 37% and 47% of pts. High satisfaction with the education course, CENTS counselors, and PAF case managers were reported by 73%, 80%, and 91% of pts. CENTS counselors assisted pts most often with budgeting, retirement planning, and medical bill questions. PAF case managers assisted pts with gaps in insurance, debt or cost of living issues, and employment rights and disability applications. A total of $7,667 ($1,267 for pts and $6,400 for institutions) was obtained through charitable entities. Conclusions: Our findings confirm that a financial navigation program is feasible to implement, associated with high satisfaction, and provides concrete assistance to pts in navigating the cost of cancer care. Future work will focus on improving program adherence and measuring its impact on financial and clinical outcomes.


Blood ◽  
2017 ◽  
Vol 130 (Suppl_1) ◽  
pp. 684-684
Author(s):  
Diana Y Salas Coronado ◽  
Theresa Hahn ◽  
Randy Albelda ◽  
Nandita Khera ◽  
Oreofe O. Odejide ◽  
...  

Abstract Background: Financial burden during cancer treatment is associated with compromised patient-reported outcomes (PROs). Being aware of impending costs may help preserve affected PROs during treatment, as patients can adjust their financial expectations. We aimed to determine if the relationship between financial burden and PROs differs among those who were aware versus unaware of transplant-related costs before hematopoietic cell transplantation (HCT) for hematologic malignancy. Methods: In 2015, we administered a mailed survey to adult patients at least 150 days after autologous or allogeneic HCT at three centers: Dana-Farber Cancer Institute, Roswell Park Cancer Institute, and Mayo Clinic Arizona. We assessed pre-treatment awareness of transplant-related costs, decreased household income after HCT, and financial hardship (defined as any one or two of the following: reporting being either unsatisfied with present finances, having difficulty meeting monthly bill payments, or not having enough money at the end of the month; given that experiencing all three would represent extreme hardship likely to impact PROs regardless of awareness, we excluded this group). A seven-point scale was provided for perceptions of overall quality of life (QOL, and patient-reported stress was measured with the Perceived Stress Scale (PSS-4). We fit regression models-stratified by awareness-to assess for the association of income decline and financial hardship with QOL below the median and perceived stress above the median (adjusting for transplant type, sex, age, race, marital status, income, distance to transplant center, and time since diagnosis). Results:In the overall survey cohort (n=325; response rate = 65.1%), 21.6% reported being unaware of HCT-related costs, with no differences due to age, race, income, or education as compared to those who were aware. Patients who reported being aware prior to transplant most often reported being informed of costs by a social worker (40.6%) and least often by a physician (23.4%; sources not mutually exclusive). Among aware patients, income decline after HCT was not associated with QOL below the median (AOR 1.4 [0.8, 2.5]; p=0.24); in contrast, among the unaware, income decline increased the odds of reporting worse QOL (AOR 4.3 [1.1, 16.7]; p=0.04). Among the aware, self-reported financial hardship was associated with worse QOL after HCT (AOR 2.7 [1.5, 4.8]; p=<.001), but the odds were even higher among the unaware (AOR 4.7 [1.2, 19.4]; p=0.03). Similar increases were observed among the unaware for the association of decline in income and financial hardship with increased perceived stress. Conclusions: In this large multi-institutional cohort of patients post-HCT, more than one-fifth reported being unaware of transplant-related costs before the procedure. Moreover, this analysis suggests that pre-treatment awareness of transplant-related costs may ameliorate the impact of post-HCT financial burden on patient-reported outcomes. Figure Figure. Disclosures Khera: Novartis: Consultancy. Zafar: Novartis: Other: Spouse's Employment.


2021 ◽  
Vol 266 ◽  
pp. 160-167
Author(s):  
Jordan M. Broekhuis ◽  
Chun Li ◽  
Hao Wei Chen ◽  
Natalia Chaves ◽  
Sarah Duncan ◽  
...  

2021 ◽  
pp. ijgc-2021-002885
Author(s):  
Jacqueline Feinberg ◽  
Karen Carthew ◽  
Emily Webster ◽  
Kaity Chang ◽  
Nita McNeil ◽  
...  

ObjectiveGiven the inconvenience and financial burden of frequent ovarian cancer surveillance and the risks of in-person visits due to COVID-19, which have led to the acceleration of telehealth adaptation, we sought to assess the role of in-person physical examination for the detection of ovarian cancer recurrence among patients enrolled in a routine surveillance program.MethodsThis was a retrospective study of patients initially seen from January 2015 to December 2017 who experienced ovarian cancer recurrence during first clinical remission. Descriptive statistics and bivariate analyses were performed to compare differences in detection methods and in patient and disease characteristics.ResultsAmong 147 patients who met our inclusion criteria, there were no recurrences detected by physical examination alone. Forty-six (31%) patients had recurrence first detected by tumor marker, 81 (55%) by radiographic scan, 17 (12%) by presentation of new symptoms, and 3 (2%) by biopsies taken during non-oncological surgery. One hundred and eleven patients (75%) had multiple positive findings at the time of recurrence. Of all 147 patients, 48 (33%) had symptoms, 21 (14%) had physical examination findings, 106 (72%) had increases in tumor markers, and 141 (96%) had changes on imaging.ConclusionsIn-person physical examination was not a primary means of detection for ovarian cancer recurrence for any patient. Substituting in-person visits for virtual visits that include patient-reported symptoms, alongside a regular surveillance protocol that includes tumor marker testing and imaging, may be a suitable approach for the detection of ovarian cancer recurrence while also reducing patient inconvenience and risks to health.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 6594-6594
Author(s):  
Sandeep Sai Voleti ◽  
Sikander Ailawadhi ◽  
Carolyn Mead-Harvey ◽  
Rahma M. Warsame ◽  
Rafael Fonseca ◽  
...  

6594 Background: Patient reported financial hardship (FH) in cancer care is a growing challenge for patients, their caregivers and healthcare providers. As treatment costs escalate, it is imperative to develop effective strategies to proactively recognize and mitigate FH within oncology practice. Using automated processes to screen and refer patients to appropriate resources is a potential option. At Mayo Clinic, screening for FH involves using a single financial strain question ‘ How hard is it for you to pay for the very basics like food, housing, medical care, and heating?’ completed by all cancer patients annually as part of the Social Determinants of Health (SDOH) assessment. In this study, we describe the prevalence and predictors for FH (denoted by the answer ‘hard and very hard’) in our patient population. Methods: Patients receiving cancer care at the three Mayo Clinic sites (Minnesota, Arizona, and Florida) who completed the FH screen at least once were included in this study. Demographics (age, gender, race/ ethnicity, insurance, employment status, marital status, and zip code) and disease state data for included patients was extracted from the EMR and Mayo Clinic Cancer Registry. Disease state was categorized by type of cancer (hematological or solid malignancy) and cancer stage. Zip code was used to derive median income, rural/urban residence and distance from the cancer center. Multivariable logistic regression models were utilized to examine factors associated with FH. Results: The final study cohort included 31,969 patients with median age 66 years (IQR 57,73), 51% females, and 76% married. Race/ethnicity composition was 93% White, 3% Black, and 4% Hispanic. 52% of patients had Medicare and 43% had commercial insurance. Other notable factors included 48% retired, 41% working/ students, 76% married, and 72% urban residents. Median time from cancer diagnosis was 1.1 year (IQR 0.1, 3.8) and median income was $64,406 (IQR 53,067, 82,038). 31% of patients had hematological malignancies, 20% of the cancers for which staging information was available were metastatic. FH was reported by 4% (n = 1194) of the patients. A significantly higher likelihood of endorsing FH (p < 0.001 for all) was noted in Hispanic (OR 1.64), Black (OR 1.84), American Indian/Alaskan native (OR 2.02), below median income (OR 1.48), rural (OR 1.17), self-pay (OR 2.77), Medicaid (OR 2.29), Medicare (OR 1.43), unemployed/disabled (OR 2.39), single (OR 2.07), or divorced (OR 2.43) patients. Older age, being retired, and living farther from the cancer center were associated with significantly less likelihood of endorsing FH. Conclusions: Our study successfully leveraged the EMR to identify key sociodemographic groups more likely to report FH. An electronic trigger to flag such patients at high-risk of FH and proactively address FH is currently being developed.


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4712-4712
Author(s):  
Shoshana Revel-Vilk ◽  
Tama Dinur ◽  
Majdolen Istaiti ◽  
Dafna Frydman ◽  
Michal Becker-Cohen ◽  
...  

The introduction of disease specific therapy for patients with type 1 Gaucher disease (GD) was a revolution in the management of patients, but not without significant cost to the patient and to society. The management of mildly effected patients is still debated, and reviews about GD as well as chapters in textbooks fail to emphasize the fact that some patients may remain untreated for many years without any GD-related complications. Patient reported outcome measures (PROMs) were developed as a way to ascertain patients' views of their symptoms, their functional status, and their health-related quality-of-life (HRQoL). In this study, we evaluated the responses to a GD -specific PROM of untreated patients with GD1 and compared them to patients on GD-specific therapy. Methods: A PROM survey was developed for GD including 15 questions; six Point Verbal Response Scale regarding the last month and nine Visual Analogue Scales (VAS) from 0-10 regarding the last week (Elstein D, et al. Molecular Genetics and Metabolism 2019;126:S52). The PROM survey was proven to be accurate in encompassing disease-specific patient concerns. A Hebrew translated version of the GD-PROM was sent via mobile phone survey to 400 adult patients with type 1 GD followed in our Gaucher Unit. Clinical data and treatment status were extracted from the clinical charts. T-test and Mann-Whitney U test were used to compare normally and non-normally distributed data in independent samples, respectively. IBM SPSS version 25 was used for analysis. Results were considered to be statistically significant when two-tailed P-values were ≤0.01. Results: A total of 181 patients responded (45% response rate) of whom 65 (36%) were followed for at least 5 years in our unit without receiving GD specific therapy, i.e. enzyme replacement therapy (ERT) and/or substrate reduction therapy (SRT). The median (range) age of patients, 49 (20-91) years, was not significantly different between treated and untreated patients. The percentage of patients with the N370S/N370S genotype was significantly higher in untreated patients [55/65 (85%)] compared to treated patients [67/116 (57%)]. Significantly more treated patients reported that GD had restricted their education/job (38, 34%) and fun activities (29,25%) compared to untreated patients, (4, 6.5%) and (2, 3%), respectively. Compared to untreated patients, treated patients were more worried to be an emotional burden on others [27 (23%) vs. 3 (5%)], of being financial burden on others [57 (50%) vs. 16 (25%)] and more concerned regarding the risk of bone disease [82 (74%) vs. 26 (40%)], and the risk of Parkinson disease [72 (64%) vs. 27 (42%)]. Treated patients had a significantly higher score on VAS for questions on swollen abdomen, fatigue, physical weakness, severity of bone pain and worry regarding the future over the past week compared to untreated patients (Table 1). Patients concern regarding the risk for cancer (32%) and VAS score for a question on depression were similar between groups. Conclusion:The GD-specific PROM survey shows that asymptomatic or mildly affected untreated patients with GD1 have good functional status and HRQoL, supporting our practice that not all patients with GD1 require disease-specific therapy. Still, we advise a periodic (annual or bi-annual) follow-up, preferably at a referral center. Inclusion of GD-specific PROMs in the periodic assessments is important for better understanding patients' perspectives. It is important to note that mildly affected and asymptomatic patients are mainly found among Ashkenazi Jews and from this aspect our cohort reflects patients' populations in Israel, USA, UK, etc. but less relevant to non-Jewish and particularly to Asian cohorts. With the expected increase in early diagnosis via parental and/or newborn screening the understanding that not all subjects diagnosed with GD needs disease-specific therapy is all the more important. Despite the expected differences between the more severely affected treated patients and the by definition milder untreated ones, still a high percentage of the treated patients show good HRQoL parameters, reflecting the overall success of ERT/SRT. Larger cohorts and further analysis will evaluate potential predictors for differences in PROMs within the treatment group. Disclosures Revel-Vilk: Sanofi: Honoraria, Other: Travel, Research Funding; Pfizer: Honoraria, Other: Travel, Research Funding; Takeda: Honoraria, Other: Travel, Research Funding; Prevail therapeutics: Honoraria, Other: Travel, Research Funding. Zimran:Prevail Therapeutics: Consultancy; TAKEDA: Honoraria; Centogene: Other: research grant; Targeted Cell Therapies: Consultancy; Pfize: Honoraria, Research Funding; Shire: Consultancy, Honoraria, Research Funding; Bio-events: Honoraria.


2021 ◽  
Vol 12 ◽  
Author(s):  
Ashika Mani ◽  
Tales Santini ◽  
Radhika Puppala ◽  
Megan Dahl ◽  
Shruthi Venkatesh ◽  
...  

Background: Magnetic resonance (MR) scans are routine clinical procedures for monitoring people with multiple sclerosis (PwMS). Patient discomfort, timely scheduling, and financial burden motivate the need to accelerate MR scan time. We examined the clinical application of a deep learning (DL) model in restoring the image quality of accelerated routine clinical brain MR scans for PwMS.Methods: We acquired fast 3D T1w BRAVO and fast 3D T2w FLAIR MRI sequences (half the phase encodes and half the number of slices) in parallel to conventional parameters. Using a subset of the scans, we trained a DL model to generate images from fast scans with quality similar to the conventional scans and then applied the model to the remaining scans. We calculated clinically relevant T1w volumetrics (normalized whole brain, thalamic, gray matter, and white matter volume) for all scans and T2 lesion volume in a sub-analysis. We performed paired t-tests comparing conventional, fast, and fast with DL for these volumetrics, and fit repeated measures mixed-effects models to test for differences in correlations between volumetrics and clinically relevant patient-reported outcomes (PRO).Results: We found statistically significant but small differences between conventional and fast scans with DL for all T1w volumetrics. There was no difference in the extent to which the key T1w volumetrics correlated with clinically relevant PROs of MS symptom burden and neurological disability.Conclusion: A deep learning model that improves the image quality of the accelerated routine clinical brain MR scans has the potential to inform clinically relevant outcomes in MS.


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