On Location IOM/ACS Pediatric Oncology Workshop
and the parents, and the parent and the child. “This is
tough stuff,” Dr. Feudtner commented, “but if done right,
it becomes the fabric of resilience that is so important to
long-term outcomes.”
Psychosocial Needs
There have been many strides in psychosocial care
over the past decades, when cancer conversations were
shrouded in secrecy, according to Lori Weiner, PhD,
from the National Cancer Institute, who walked attendees
through the development of palliative psychosocial care
in this setting, and outlined areas where progress is still
forthcoming.
Children and families at all stages of the cancer trajectory experience distress and suffering from “family life
disruptions, rigorous treatments, unpredictable setbacks,
repeated invasive procedures, and burdensome symptoms.”1 However, many barriers to effective palliative
pediatric care prevent children and families from taking
full advantage of these services, Dr. Weiner added. These
barriers include: ineffective communications between
health-care providers and families, misalignments between patient/family needs and available resources, and
the lack of formal education in palliative and end-of-life
care for children.
The changes being implemented in adult cancer care
have yet to trickle down to pediatric care. For instance,
Dr. Weiner said, a simple terminology change in adult
settings (from “palliative care” to “supportive care”) has
led to earlier and more frequent use of services.2 Addressing misconceptions about palliative care and integrating
it into the entire disease course, from diagnosis onward,
would also benefit patients and caregivers.
Lori Weiner, PhD
Cost of Care: A Problem without an Age Limit
“In the United States, it’s said that health-related costs are
a common cause of bankruptcies,” Dr. Larson said. “It
seems that each new drug comes in at a higher price, and
the price jump is not fully justified by a greater benefit.
Bankrupting a family to obtain an extra two or three weeks
at the end of life when the patient is not well hardly seems
worth it,” Dr. Larson commented, noting that the targeted
cancer therapies come with especially high price tags.
Kira Bona, MD, MPH, from Dana-Farber Cancer
Institute, addressed both the impact of socioeconomic
status on outcomes and the material hardships wrought
by illness and its treatment in her presentation. While
race, ethnicity, and socioeconomic status are known to
drive cancer incidence and outcomes in adult oncology,
data in pediatric oncology are sparse, Dr. Bona said.
Dr. Bona highlighted other gaps limiting our understanding of socioeconomic status on outcomes and
material hardships:
36
ASH Clinical News
• Inferior survival in racial and ethnic minorities is
documented but poorly understood.
• Pediatric oncology providers do not routinely consider poverty as a mediator of clinical outcomes and
quality of life.
• Researchers do not assess financial hardship as a
consequence of therapy on a regular basis.
“ e’ve addressed [the
W
lack of support] in
adult hospice care,
but not sufficiently in
pediatrics.”
—RICHARD A. LARSON, MD
Pediatric oncology research outcomes are meaningful,
she emphasized, only if targetable measures of poverty
are identified – such as the six-item U.S. Household Food
Security Scale and definitions of housing insecurity. Dr.
Bona detailed research supporting that these measures of
poverty are targetable: programs addressing food, housing,
and energy insecurity improve childhood health, reduce
under-nutrition, and reduce hospitalizations.
Other analyses have demonstrated that poverty negatively impacts survival in pediatric cancer: children living in
middle and high poverty areas experienced 31 percent and
88 percent higher all-cause mortality, according to a report
from the Department of Health and Human Services.3
Federal estimates also show that material hardship increased
chances fivefold of being in fair or poor health, with higher
rates of hospitalization, injury, and infectious disease.4
Unfortunately, awareness of these social determinants
of health is not reflected in research protocols and upfront systematic data collection, making their effects on
outcomes opaque. Reliance on non-targetable measures,
like zip code as a proxy for income, is inadequate for useful assessment of interventions.
Dr. Bona recommended systematic and standardized
collection of socio-demographic variables, including
screening for material hardship, and robust testing of
their relationship with clinical outcomes. This, she said,
can be implemented immediately.
Pediatric-specific oncology research confirms the significant financial burden that childhood cancer treatment
place 2