Almost a third of families of children with newly diagnosed acute lymphocytic leukemia (ALL) had housing or food-related hardships or "catastrophic" income loss during standard chemotherapy, according to a study reported here.
At some point during 2 years of chemotherapy, 30% of families reported household material hardship and 31.5% had income loss ≥25% (catastrophic). Housing insecurity was the primary factor in household material hardship. A fourth of families with no material hardships at ALL diagnosis subsequently had catastrophic financial toxicity during therapy.
"I think one immediate takeaway is that it's really clinically important to standardize repeated longitudinal financial screening over the course of cancer treatment," said Daniel Zheng, MD, from Children's Hospital of Philadelphia, during a press briefing at the American Society of Hematology annual meeting. "This can't be the type of thing where you meet a family at diagnosis, get an initial screen, and then you just assume that the family is going to be fine for the subsequent 2 years."
"This also brings up the critical need for family-centered intervention," he added. "Some of the co-authors of this study are currently leading interventional studies exploring things like benefits counseling and cash transfer as potential interventions to mitigate financial toxicity."
During a discussion that followed his presentation, press briefing moderator Adam Cuker, MD, of the University of Pennsylvania in Philadelphia, asked Zheng, "If there was one intervention that you could implement at your institution right now that you think might make a dent in this problem, what would that be?"
Zheng responded, "I personally am most excited about seeing results for direct cash transfer. I think that is the simplest proof-of-concept that can address financial toxicity. It also lends itself to flexibility. Probably a number of different stressors and factors are involved, and I would imagine they are not the same for every single family. Having something like direct cash transfer allows for the flexibility to help with different patients."
With regard to actions that providers can take to help address financial toxicity issues, Zheng said, "One of the first things that we need to do is identify the problem by simply asking about it."
"We know from a national survey of pediatric oncology social workers that over half of them don't do standardized, systematic financial screening beyond the initial diagnostic period. These results suggest that you're going to miss a substantial number of families who will go on to experience these financial struggles. Most centers have some level of social and financial support that you can plug patients into, so that would be the first thing."
Most providers of cancer care do not have training in financial issues affecting patients and are not accustomed to having conversations with patients and families about the issues, he continued. Providers should "brainstorm" about low resource-intensive strategies that can help mitigate some of the financial burden.
"I remember talking to a family about the price of an antifungal medication and about how there was a dramatic difference in the cost from one formulation to another," said Zheng. "The family had no idea that the formulation really didn't matter to the provider. They thought they had to get the medicine that was prescribed for their child. They were paying an exorbitant amount for a standard antimicrobial prophylaxis. Those kinds of things can make a substantial difference for an individual family."
ALL is the most common childhood cancer, and successful treatment routinely involves 2 years or more of chemotherapy, Zheng noted in his introduction to the study. Treatment can involve as many as 200 outpatient encounters and 40 inpatient days, creating the potential for a significant financial burden on families.
To examine financial issues more closely, investigators surveyed caregivers of children enrolled in ALL clinical trials. Caregivers completed the surveys four times during the patients' 2-year chemotherapy regimen, providing information about household finances. The primary objective was to determine the frequency and characteristics of household material hardship and catastrophic income loss.
Examples of survey items included:
- Was there a time you were not able to pay the rent or mortgage on time?
- 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?
By 24 months, almost a third of the families had endured household material hardship and/or catastrophic income loss. The number of families affected increased fairly rapidly up to 12 months and then accelerated again after 18 months. Material hardship was driven primarily by housing insecurity (22.2%), followed by food insecurity (15.9%) and utilities (8.6%).
A fourth of families with no household material hardship at their child's ALL diagnosis reported new material hardships or catastrophic income loss during chemotherapy, said Zheng.
During an ASH-sponsored webinar reviewing the meeting's press briefings, Jennifer R. Brown, MD, PhD, of Dana-Farber Cancer Institute in Boston, noted that the study is the first pediatric oncology study "to systematically collect data on financial toxicities for families with a child undergoing the 2 years of therapy."
The findings emphasize that clinicians should engage parents in discussions about potential financial stressors earlier in the treatment process.
"Probably not at the very moment of diagnosis, when you're establishing a treatment plan, but as part of your overall strategy for developing the treatment plan for the patient and providing social support to the family," said Brown. "Probably, people should be screened for their risk and their [financial] situation should be discussed. Anything the physician's office can do to try and intervene, we can obviously try to implement."
Disclosures
Zheng reported no relevant financial disclosures.
Cuker disclosed relationships with Novartis, UpToDate, Pfizer, Bioverativ, Novo Nordisk, Stago, Sanofi, MindSight, New York Blood Center, and Synergy.
Brown disclosed relationships with AstraZeneca, Grifols Shared Services, Eli Lilly, ER Squibb & Sons, Genentech, and AbbVie.
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