To evaluate the prevalence of financial toxicity and observe the effect of Coverage and Cost-of-Care Links, a program providing financial navigation, investigators initiated a nonrandomized study.
Patients with hematologic malignancies often experience high costs during treatment and require a caregiver. To evaluate the prevalence of financial toxicity and observe the effect of Coverage and Cost-of-Care Links (CC Links), a program providing financial navigation, investigators initiated a nonrandomized study (NCT05465577).
Financial navigation is “a comprehensive program where we’re screening for financial toxicity and helping the patient and the caregiver get connected with resources,” according to Jean Edward, PhD, RN, CHPE. “That sometimes involves helping them to find the right insurance plan, understand the insurance, understand the cost of care, make calls on their behalf if they need to like a liaison at times, and following up on those things.”
The results of the single-arm, feasibility CC Links study were recently published in JCO Oncology Practice. Investigators observed statistically significant decreases in the comprehensive score for financial toxicity (COST), defined as the psychological, material, and behavior aspects of financial hardship from cancer, using a paired t-test. The comparison of means for COST score for patients (n = 54) was 2.42 (P = .019) and was 2.43 (P = .021) for caregivers (n = 32). The total financial toxicity was 1.53 (P = .13) for patients and was statistically significant for caregivers at 2.13 (P = .041). Further, material conditions score was also statistically significant for caregivers with a t-score of 2.25 (P = .031).
Participants in the study received an average financial benefit of $2500 as the financial navigator secured a total of $124,600 for 48 participants with $24,000 toward travel, $16,000 toward urgent need, $9100 toward patient financial assistance, and $75,500 in copay assistance grants.
“As nurses we should understand that there are challenges and barriers to these costs and they are high,” Edward noted. “We need to be able to assess the social determinants of health. When you truly assess somebody's social determinants of health, there are so many areas that come up that inform financial needs.”
In an interview with Oncology Nursing News®, Edward, an associate professor and assistant dean of Diversity, Equity & Inclusion at the University of Kentucky (UK) College of Nursing and a Nurse Scientist for UK HealthCare’s Markey Cancer Center in Lexington, highlighted implications of the study and provided additional resources patients can use to help combat financial toxicity during cancer care.
“Nurses are big advocates for patients and when a patient shares, ‘I’m concerned about this, I’m not able to afford food for my family because I’m worried about paying for my chemotherapy or my treatment,’ then they need to be able to advocate for the patient so that they can bring up these concerns to the provider or the health care team.”
Edward explained that knowing what resources exist within the health system such as social workers, navigators, counselors, as well as financial assistance programs or patient grants are crucial. Cancer centers may have social workers who often aid with financial issues; however, they may be unable to assist with insurance or identifying barriers that exist with patient’s finances. Financial counselors may be an available resource at centers for those hurdles.
Of the 60 patients and 34 caregivers enrolled in the study, approximately one-third of patients (33.3%) and caregivers (31.3%) were living at or below the federal poverty level.
The National Comprehensive Cancer Network’s Distress Thermometer and the FACIT-COST were used to screen patients in the study with a COST score of less than 24 recorded for 90.0% of patients and 85.3% of caregivers. A distress thermometer score of greater than 4 was recorded in 61.7% of patients and 54.5% of caregivers.
“I think we’re going to see a lot more individuals screening positive for financial toxicity in the future and that’s important,” Edward said. “We need to continue screening and understanding financial needs from a broader social determinants of health perspective…sometimes we would find that a patient would screen positive on the financial toxicity score, but on the distress thermometer they were fine, so they didn’t screen positive. That’s why it’s important that we use several tools, so we don’t lose anyone when we just go by a number.”
Of 1179 patients screened in the study, 297 were positive for financial toxicity with 219 meeting the study inclusion criteria; however, only 60 patients agreed to participate in CC Links and complete pre-intervention surveys, and 34 caregivers consented and complete the surveys. Although this indicates that only 27% of eligible patients enrolled in the study, 100% of eligible caregivers participated. Participants rated the intervention at 89% for acceptability and 88% for appropriateness.
The mean age for patients was 50.7 years and was 46.6 years for caregivers. Most caregivers were a spouse or partner (50%), others included adult child (25%), other relative (31.7%), or friend (11.7%). Most patients and caregivers were women (51.7% vs 52.9%), White (91.7% vs 94.1%), and had Medicare/Medicaid (64.4% vs 45.4%). Other insurances included 1 patient having TRICARE, and 5.1% vs 9.1% having no insurance. Further, 30% of patients received a blood or bone marrow transplant (BMT), 66.7% received chemotherapy, 36.7% of patients had lymphoma and 25.0% had leukemia.
One barrier for participation was contacting patients, and Edward noted that there were other compounding factors that may have played a role, including general discomfort discussing finances. “In order to overcome that we need to build trust with our patients first and their caregivers before asking them these heavy financial questions and remind them that we’re asking this information in order to help them,” Edward said.
Additionally, some patients may wait until they have received bills or are struggling to pay after being in treatment for a long period of time before calling a financial navigator with a worst-case scenario of experiencing bankruptcy or debt.
“We’ve noticed that when we talk about available resources, individuals will say, ‘I think somebody else could use that more than me,’ even if they’re struggling. That’s beautiful. It shows humanity, that patients they do care and they want someone else to benefit from this. We need to remind them that everyone’s eligible, anyone can join, we are assisting as many people as we can, so don’t feel bad about enrolling in this program.”
Participants had an average of 3 in-person meetings (range, 0-21) and 5 telephone interactions (range, 1-23) with the financial navigator in the Division of Hematology and BMT at the University of Kentucky, a National Cancer Institute–designated Cancer Center, where the study was conducted. Screening took place from April 2021 to January 2022 during inpatient and outpatient visits and the financial navigator aided patients and caregivers by screening participants, providing cost-of-care estimates, and coordinating financial assistance among several other roles.
“Even though in this study we collected a lot of quantitative information and we’ve had positive outcomes, we also collected qualitative data and we asked patients and caregivers what experiences they’ve had with the navigator,” Edward said. “Those words speak louder and show the tremendous impact that our financial navigation program had on these patients and their caregivers. Any data that you can collect to show the impact that you’re having is going to speak volumes and help support work like this in the future.”
Additional resources Edward highlighted included adapting CC Links for further populations; a financial and legal navigation intervention established in the University of Kentucky’s DanceBlue Pediatric Hematology and Oncology Clinic will be assisting patients effected by the effects of childhood cancers.
“We recently received new funding from the Kentucky Pediatric Cancer Trust Fund, to take CC Links and adapt it to be on a virtual telehealth platform,” Edward explained. “We partnered with Triage Cancer, the nonprofit, they provide free education on legal and financial issues and practical issues for survivors and caregivers. We’re going to use them to see if what if we partner with a third-party entity, could the return on investment be impacted, could we have easier workflow of screening and referring people to the assistance that they need?”
Limitations to the CC Links study included a smaller sample size, the exclusion of non–English-speaking participants, the findings could not be generalized to other patients with cancer and caregivers, and the study was unable to demonstrate feasibility.
Edward JS, McLouth LE, Rayens MK, Eisele LP, Davis TS, Hildebrandt G. Coverage and cost-of-care links: addressing financial toxicity among patients with hematologic cancer and their caregivers. JCO Oncol Pract. Published online March 8, 2023. doi:10.1200/OP.22.00665
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