Nearly a third of families with children receiving chemotherapy for acute lymphoblastic leukemia (ALL) – the most common pediatric cancer – develop serious financial difficulties during their child’s treatment, including losing 25% or more of their household income and struggling to cover the costs of basic living expenses such as housing, food, and utilities.

“To our knowledge, this is the first study in pediatric oncology to examine the financial impact associated with cancer treatment by measuring household material hardship and income loss over time,” said first author Daniel Zheng, MD, an attending oncologist with the Cancer Center at Children’s Hospital of Philadelphia, and faculty member at PolicyLab at Children’s Hospital of Philadelphia. “Many families reported experiencing financial difficulties as early as six months into treatment and nearly one in four families who reported no financial hardship at the time their child was diagnosed with cancer developed hardship during the child’s treatment.”

Around 3,000 new cases of ALL are diagnosed each year in the United States. While more than 90% of children treated for ALL survive, Dr. Zheng said, successful treatment typically involves at least two years of multidrug chemotherapy. “That’s a lot of clinic visits, hospitalizations, and disruption of a family’s day-to-day life.”

Having a child with cancer places a special burden on families, he said. For example, a caregiver may have to take time off work to take the child to their appointments or stay with them during hospitalizations. “We wanted to try to understand the nature and extent of the financial hardship that treatment for childhood cancer creates for families so that we can better support them during this journey,” he said.

The study involved children enrolled in a clinical trial of therapies for previously untreated ALL between 2017 and 2021 at eight medical centers in the U.S. and Canada. Participants under age 18 and their families were invited to also take part in an analysis of the financial impact of ALL treatment. The study’s primary endpoint was “financial toxicity,” defined as the development of new financial hardship (i.e. inability to pay for housing, food, or utilities, or the loss of at least 25% of household income) during the two years of their child’s chemotherapy treatment. 

A total of 422 families (88% of those eligible) opted to participate. Of these families, 15% were Hispanic and 7% non-Hispanic Black; 23% were single-parent households; and 40% had an annual income below 200% of the federal poverty level. They completed questionnaires four times (within about 30 days of diagnosis and at six, 12, and 24 months), which asked the families their household income and whether they were able to cover the costs of housing, food, or utilities at each time point.  

At six months, 19.3% of families said they had experienced new difficulties covering the cost of housing, food, or utilities, and 20.3% said they had lost 25% or more of their annual income since the start of treatment. By the end of chemotherapy at 24 months, 30% of families had experienced difficulty covering living expenses and 31.5% had lost 25% or more of their income during treatment.

Notably, among the 307 families who started treatment reporting no financial hardships, 24.3% experienced new difficulties meeting basic living costs and 27.9% reported losing 25% or more of their income during treatment.

Children identified as Hispanic or non-Hispanic Black, who spoke a language other than English at home, lived in single-parent households, had public insurance (e.g. Medicaid), or lived in households with an income below 200% of the federal poverty line at diagnosis were more likely to develop new financial toxicity during the study period. 

“It was striking to us that by 24 months, nearly a third of the families were unable to meet basic living costs at some point during their child’s ALL treatment,” Dr. Zheng said.

A limitation of the study is that the findings are restricted to patients who were participating in a clinical trial at centers in the northeastern U.S. and Canada, and who were able to successfully complete the surveys at multiple time points. “Our data may underestimate the overall level of financial toxicity experienced by families with children being treated for ALL,” Dr. Zheng said.

Research is ongoing to identify interventions to address financial toxicity among families of children receiving cancer treatment, he said. For example, two co-authors on this study (Puja Umaretiya, MD, and Kira Bona, MD, MPH) are leading clinical trials examining whether benefits counseling and cash payments reduce financial hardship among low-income families whose children are receiving cancer treatment.