Families Face Financial Hardships in Pediatric ALL

Families of pediatric patients treated with chemotherapy for acute lymphoblastic leukemia (ALL) have experienced what researchers call catastrophic financial toxicities in almost a third of their families according to data presented at the 2025 ASH Annual Meeting and Exposition.

Findings were presented during a press briefing by Daniel J. Zheng, MD, of the Division of Oncology at Children’s Hospital of Philadelphia in Pennsylvania.

Zheng stated that after children in the phase 3 DFCI 16-001 trial (NCT03020030) had received chemotherapy for 24 months, 30.0% of families had experienced household material hardship (HMH), and 31.5% of families had experienced a catastrophic income loss at some point during therapy.

“Household material hardship can be thought of as difficulty with meeting your basic living needs,” Zheng said. “So, this is most commonly explored in the dimensions of housing, food, and utilities insecurities. In this study, we measured whether families develop new HMH or catastrophic income loss, which we defined as greater than or equal to 25% of a family's annual household income.”

Study Background

Pediatric ALL, Zheng stated, is the most common childhood cancer.

“And while our current cure rates are actually exceptional, successful treatment still entails more than two years of multi-agent chemotherapy, and that's a treatment paradigm that has the potential for significant financial burden for families,” he said. “Prior research has estimated an average of 200 outpatient encounters in 40 inpatient days. That's a lot of disruption to a family's day-to-day life and can result in things like direct costs of transportation and child care for other siblings, and then indirect costs like taking time off from work or even one caregiver completely quitting their job.”

DFCI 16-001 enrolled patients age 1 to 21 years with de novo B- or T-cell ALL at 8 US and Canadian centers from 2017 to 2021. Participants younger than 18 years were eligible to opt in to the correlative HMH study at the time of initial trial consent, with parents or guardians of participants completing surveys within 32 days of trial enrollment and longitudinally at 6, 12, and 24 months.

Among 422 participants — 15% of whom were Hispanic and 7% of whom were non-Hispanic Black, 23% of whom were in a single-parent household and 40% had annual household income less than 200% of the federal poverty level — with evaluable baseline survey data, 115, or 27%, reported HMH at baseline, researchers noted.

Cumulative incidence of any new HMH was 19.3% (95% CI: 15.9-23.5) at 6 months, 27.7% (95% CI: 23.8-32.4) at 12 months, and 30.0% (95% CI: 25.9-34.7) at 24 months, while the cumulative incidence of catastrophic income loss was 20.3% (95% CI: 16.7-24.7) at 6 months, 28.6% (95% CI: 24.5-33.5) at 12 months, and 31.5% (95% CI: 27.2-36.5) at 24 months, researchers reported.

Furthermore, in the subcohort of 307 families with no baseline HMH, the cumulative incidences of any new HMH or catastrophic income loss at 24 months were 24.3% (95% CI: 19.9-29.6) and 27.9% (95% CI: 23.1-33.7), respectively.

Multivariable modeling showed that children who identified as non-Hispanic Black (RR 3.5, 95% CI: 1.7-7.3), lived in a single-parent household (RR 2.1, 95% CI: 1.3-3.2), preferred a non-dominant language (i.e. non-English for U.S. participants and non-English/French for Canadian participants, RR 2.1, 95% CI: 1.2-3.6), or had baseline household income that was less than 200% of the federal poverty level (RR 1.8, 95% CI: 1.1-2.9) were more likely to develop new HMH during treatment.

In this study, researchers focused on children with newly diagnosed ALL who were enrolled in a clinical trial and followed for two years of chemotherapy, with caregivers completing surveys at four time points with questions assessing HMH and household income.

Examples of survey questions shared by Zheng included:

· Was there a time you were not able to pay the rent or mortgage on time?

· We worried whether our food would run out before we got money to buy more.

· Has the gas/electric/oil company sent you a letter threatening to shut off the gas/electricity/oil to the house for not paying bills?

“Our main finding was that a striking number of families experience new household material hardship and catastrophic income loss over the course of therapy,” Zheng said.

Regarding domains of HMH, this was predominantly driven by the development of new housing insecurity (22.2%) followed by food insecurity (15.9%), and utilities insecurity (8.6).

“And then, what's particularly notable is that one in four families who had no household material hardship at diagnosis went on to develop new household material hardship and/or catastrophic income lost by the end of chemotherapy,” Zheng said.

Key Takeaway and Looking Ahead

One immediate takeaway from these findings, Zheng said, is that it is clinically important to standardize repeated longitudinal financial screening over the course of cancer treatment.

“So, this can't be the type of thing where you meet a family at diagnosis, they get an initial screening, and then you just assume that the family is going to be fine for the subsequent two years,” Zheng said. “Of course, this also brings up the critical need for family-centered intervention in this space.”

Zheng then highlighted that some of his co-authors on the study — Puja Umaretiya, MD, of UT Southwestern Medical Center, and Kira Bona, MD, of Dana-Farber Cancer Institute — are currently leading interventional studies exploring factors such as benefits counseling and cash transfer as potential interventions to mitigate financial toxicity.

References

1. Zheng D, Robinson E, Flamand Y, et al. Cumulative incidence of household material hardship and income loss as measures of financial toxicity during pediatric acute lymphoblastic leukemia (ALL) treatment: A report from the DFCI ALL 16-001 Trial. Blood. 2025;146(Supplement 1):abstract 710.