Almost 1/3 of Families of Children with Cancer Have Unmet Basic Needs During Treatment
September 23, 2015
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Study may underestimate
extent of hardship
Almost one-third of families whose children were being
treated for cancer faced food, housing or energy insecurity and one-quarter
lost more than 40 percent of household income, according to a new study from
Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. The study
follows emerging research in pediatric oncology finding that low-income status
predicts poor adherence to oral chemotherapy and decreased overall survival.
The results, which were published today in Pediatric Blood
& Cancer, were culled from surveys of 99 Dana-Farber/Boston Children’s
patients taken within a month of diagnosis and six months later. The findings
surprised researchers, who expected lower levels of need at a major center that
provides psychosocial support for each patient and has resource specialists to
help families facing financial difficulties.
“What it says is that even at a well-resourced, large
referral center, about a third of families are reporting food, housing or
energy insecurity six months into treatment,” says lead author Kira
Bona, MD, MPH, a pediatric oncologist at Dana-Farber/Boston Children’s. “If
anything, the numbers in our study are an underestimate of what might be
seen at less well-resourced institutions, which was somewhat surprising to us.”
In addition to providing a window into the financial
pressures – from work disruption to added expenses – that families face when a
child is being treated for cancer, the new study utilizes an alternative
measure of economic need. By focusing on specific material hardships, which can
be addressed through governmental or philanthropic supports, the researchers
hope they have identified variables that are easier for clinicians to
ameliorate than overall income. Subsequent research, Bona says, will examine
whether material hardship has the same effect on outcomes as low-income status.
“If household material hardship is linked to poorer outcomes
in pediatric oncology, just like income is, then we can design interventions to
fix food, housing and energy insecurity,” Bona says. “It’s not clear what you
do about income in a clinical setting.”
Researchers defined low-income as 200 percent of the federal
poverty level. Other findings include:
- At diagnosis, 20 percent of families were
low-income; six months later an additional 12 percent suffered income losses
that pushed their income below 200 percent of the federal poverty level.
- By six months after diagnosis, most (56 percent)
of adults who supported their families experienced a disruption of their work.
This included 15 percent of parents who either quit their jobs or were laid off
as a result of their child’s illness. An additional 37 percent cut their hours
or took leaves of absence. Only a third (34 percent) were paid during their
- At six months after diagnosis, 29 percent of
families reported at least one material hardship – up from the 20 percent who
reported material hardship at the time of diagnosis. Six months after their
child’s diagnosis, 20 percent of families reported food insecurity, 17 percent
reported energy insecurity, and 8 percent reported housing insecurity.
“Household material hardship provides a quantifiable and
remediable measure of poverty in pediatric oncology,” the study concludes.
“Interventions to ameliorate this concrete component of poverty could benefit a
significant proportion of pediatric oncology families.”
Joanne Wolfe, MD, MPH, director of the Pediatric Advanced
Care Team of Dana-Farber Cancer Institute and Boston Children’s Hospital was
senior author of the study. Other authors were Wendy B. London, PhD, and
Dongjing Guo, MPH, of Dana-Farber/ Boston Children’s, and Deborah Frank, MD, of
Boston Medical Center. The study was funded by the Family Reach Foundation,
Pedals for Pediatrics, St. Baldrick’s Foundation, National Palliative Care
Research Center and the American Society of Clinical Oncology.