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More Than Half of AYA Cancer Survivors Experience Financial Toxicity and Are Unable to Afford Food and Housing


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A study conducted by Kaitlyn Lapen, MD, a radiation oncologist resident at Memorial Sloan Kettering Cancer Center, and colleagues evaluated the financial challenges adolescent and young adults (AYA) survivors experience during and after treatment. They found that more than half (54%) of these survivors experience financial toxicity and are unable to afford social needs, such as food, housing, and transportation. In addition, the majority do not accept financial assistance referrals. These results demonstrated it was feasible to screen AYA survivors for financial toxicity and health-related social risks. The study results will be presented during the 2024 ASCO Quality Care Symposium (Abstract 13).

Kaitlyn Lapen, MD

Kaitlyn Lapen, MD

Previous studies have shown that AYAs with cancer often face long-term financial hardship after cancer treatment from disruptions in employment and earnings, medical debt, and high out-of-pocket medical expenses that may prevent them from gaining future financial independence, said the lead author of this study,

Study Methodology

The researchers administered a financial toxicity screening assessment tool to 2,519 patients between the ages of 15 and 39 at a comprehensive cancer center. They used the Comprehensive Score for Financial Toxicity (COST) to evaluate financial toxicity, and patients reported unmet social needs and treatment payment methods. Quality of life was assessed via a visual analog scale.

The average age of the AYA patients was 33.7 years, and most (65%) were non-Hispanic White. Disease sites included breast (41%), gastrointestinal (20%), and gynecologic (19%). More than one-half (54%) had active cancer treatment, including chemotherapy, radiation, or surgery, within 120 days of the COST assessment. Multivariate linear and logistic regression were used to test for associations with financial toxicity and unmet social needs, adjusting for demographic and clinical characteristics.

Key Results

The researchers found that the COST score was 23.2 (standard deviation [SD] = 10.8; 0–44, with lower scores indicating worse financial toxicity), and 54% had a COST score less than 26, suggesting financial toxicity. Racial and ethnic minority patients (β = –4.37, P < .001), and those who had recent treatment (β = –3.21, P < .001) had worse financial toxicity. Of those patients who screened positive for financial toxicity, just 44% accepted a referral for financial assistance. About one-quarter of the participants (28%) were unable to afford at least one social need, such as housing (16%), transportation (14%), or food (13%).

Racial and ethnic minority patients (odds ratio [OR] = 2.98, 95% confidence interval [CI] = 2.35–3.79, P < .001) and those with metastatic disease (OR = 2.45, 95% CI = 1.10–5.45, P = .028) were more likely to have at least one unmet social need. One-quarter of the AYA survivors (24%) used at least some of their savings to pay for treatment, with 7% reporting they did not have any savings. Twenty-five percent borrowed money or took on new loans to pay for treatment: of these individuals, 58% borrowed from friends or family. A total of 10% did not have enough money for medications, and 7% took fewer medications than prescribed because of the cost. Increased financial toxicity was associated with reduced quality of life (β = –0.10, P < .001), use of more savings to pay for treatment (β = 0.52, P < .001), and fewer medications taken because of cost (β = 0.01, P < .001).

KEY POINTS

  • A recent study has shown that more than half of AYA cancer survivors experience financial toxicity and are unable to afford social needs, such as food, housing, and transportation. The majority do not accept financial assistance referrals.
  • These results demonstrate it is feasible to screen AYA survivors for financial toxicity and health-related social risks.
  • Raising awareness of cancer financial toxicity may help galvanize public policy to mitigate the problem.

“Routine financial toxicity and social needs screening is feasible for AYA patients and uncovers high rates of financial toxicity and unmet social needs. Given lower quality of life and decreased adherence to treatment associated with financial toxicity, future research should focus on interventions to support the specific needs of AYA [survivors] and increase acceptance of financial assistance and navigation,” concluded the study authors.

Clinical Significance

“Adolescents and young adults with cancer appear to face high rates of financial toxicity and unmet social needs,” said Dr. Lapen, lead author of the study, in a statement. “Although economic hardships and burdens as a result of cancer diagnosis, treatment, and management may often go unaddressed, they are common and should be acknowledged. Making more people aware of the prevalence and impact of financial toxicity may also galvanize advancements in policy to mitigate financial toxicity.”

Disclosure: This study was funded in part through a National Institutes of Health/National Cancer Institute Cancer Center Support Grant. For full disclosures of the study authors, visit coi.asco.org.


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