Dana-Farber-led study shows families develop food, housing insecurity or income loss during cancer treatment
Families fighting childhood leukemia often battle another hardship: poverty. Researchers at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center show that one in three families of children treated for acute lymphoblastic leukemia (ALL) experiences serious financial hardship (also called financial toxicity) during the two years of chemotherapy. In a new multicenter study, researchers found that by the completion of chemotherapy treatment, about one in three parents reported struggling to keep food on the table, pay the rent or mortgage, or keep the heat and lights on. A similar number experienced catastrophic income loss—at least 25% of their household income—as a result of missed work and lost wages while caring for a child in clinic and at the bedside. Perhaps most striking, one in four families who were not struggling at the time of their child’s cancer diagnosis developed this severe financial hardship by the end of treatment.
Kira Bona, MD, MPH
“For many families whose child is diagnosed with cancer, that cancer diagnosis may actually not be the hardest thing they're facing,” said senior author Dr. Kira Bona, a pediatric oncologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “The reality that we are making one in four families experience basic resource needs—worries about things like putting enough food on the table—during their child's chemotherapy is an unacceptable outcome. These data should be shocking to us. At the same time, they identify an immediate opportunity to start testing new supportive care interventions to mitigate this financial toxicity.”
The Dana-Farber ALL Consortium Trial 16-001 was the first pediatric oncology trial to track parent-reported household needs and income over time. Researchers surveyed families at eight U.S. and Canadian centers at diagnosis and at six, 12, and 24 months. Almost 90% of parents in the trial were willing to participate, and the survey collected information on concrete, real-world measures: whether food ran out, rent or utilities fell behind, changes in household income.
By six months, about one in five had developed a new unmet basic need or lost at least a quarter of their household income; by two years, roughly one in three faced food, housing, or utility insecurity, with a similar share experiencing catastrophic income loss. Even families without hardship at diagnosis were vulnerable, one in four developed basic unmet needs during treatment. Hardship was also not evenly distributed, with disproportionate impact on non-Hispanic Black families, single-parent households, families preferring non-English languages, and those with lower incomes.
The findings were presented by Daniel Zheng, MD, of the Children’s Hospital of Philadelphia, at the 67th American Society for Hematology Annual Meeting and Exposition on December 7 in Orlando, FL.
Dana-Farber pioneered this approach to collecting information directly from parents in pediatric oncology, embedding questions about food, housing, and utility insecurity into a frontline leukemia trial to learn what families face at home. That early work in the Dana-Farber ALL Consortium laid the groundwork for similar efforts in national trials via the Children’s Oncology Group, building a foundation for equity-focused supportive care across pediatric cancer.
The study points to steps care teams can take right now. Systematic financial screening early in treatment can help identify families who need support before hardship deepens. Dana-Farber is already testing practical solutions designed to meet basic needs during the most intensive months of care. The Institute’s RISE program provides temporary cash support during the first six months of chemotherapy to help families stabilize, and it will be evaluated in the next Dana-Farber ALL Consortium trial (DFCI-25-001) as a randomized controlled study for low-income families. That trial will test whether a brief period of cash support during the early months of a child’s chemotherapy treatment can reduce financial toxicity; it will also explore the impact of RISE on other outcomes, such as how many days a child spends in the hospital.
“If we can figure out how to cure childhood cancer, we can absolutely figure out how to address poverty caused by a child's cancer treatment,” said Bona. “Our goal is to ensure that children go on to lead happy and healthy lives after their ALL treatment, and that requires that we make sure they have a roof over their heads and food on the table when we are done with chemotherapy. When we successfully do that, we will be improving outcomes for our patients and families.”