Childhood Cancer Survivors at Increased Risk

Jul 2, 2007
Childhood Cancer Survivors at Increased Risk of Severe
Health Problems as Adults

A substantial proportion of childhood cancer survivors
experience serious health problems as young adults,
particularly those who received radiation treatment,
according to a study in the June 27 issue of JAMA, a theme
issue on chronic diseases of children1. Huib N. Caron,
M.D., Ph.D., of Emma Children’s Hospital/Academic Medical
Center, Amsterdam, presented the findings of the study at a
JAMA media briefing in New York.

The introduction of more effective treatments for childhood
cancer has dramatically improved survival rates, but this
has been accompanied by the occurrence of late,
treatment-related complications such as second cancers,
organ dysfunction, and psychosocial and cognitive problems.
Information is limited on the occurrence and risk of
subsequent illnesses among adults who had cancer as
children, according to background information in the

Dr. Caron and colleagues conducted a study to assess the
total burden of adverse health outcomes (adverse events)
following childhood cancer and evaluated treatment-related
risk factors. The study included 1,362 five-year survivors
of childhood cancer treated in a single institution in the
Netherlands between 1966 and 1996. All survivors were
invited to a clinic for medical assessment of adverse
events. Medical follow-up was completed for 94.3 percent of
survivors (median [midpoint] follow-up, 17.0 years). At the
end of follow-up, the median age of the survivors was 24.4
years, with 88 percent of survivors younger than 35 years.

The researchers found that of the 1,362 survivors, 19.8
percent had no adverse events, 74.5 percent had one or more
events and 24.6 percent had five or more events.
Additionally, 36.8 percent of the survivors had at least
one severe or life-threatening or disabling disorder, and
3.2 percent died due to an adverse event. Almost 22 percent
of adverse events were severe, life threatening, or
disabling, or caused death. Of those events, orthopedic
disorders occurred most often, followed by second tumors,
obesity, fertility disorders, psychosocial or cognitive
disorders, neurologic disorders, and endocrine disorders.

Of all patients treated with radiotherapy only, 55 percent
had a high or severe burden of events (defined as at least
two severe events or one or more life-threatening or
disabling event), compared with 15 percent of patients
treated with chemotherapy only and 25 percent of patients
who had surgery only. Survivors of bone tumors most often
had a high or severe burden of events (64 percent), while
survivors of leukemia or Wilms tumor (tumor of the kidney)
least often had a high or severe burden of events (12
percent each).

“In conclusion, childhood cancer survivors are at increased
risk of many severe health problems, resulting in a high
burden of disease during young adulthood. This will
inevitably affect the survivors’ quality of life and also
will ultimately reduce their life expectancy. Therefore, we
feel that risk-stratified lifelong medical surveillance of
childhood cancer survivors is needed to allow early
detection of adverse events that are amenable to
intervention. Future studies should focus on the efficacy
of follow-up programs and other intervention strategies for
adverse events, to further improve health outcomes in
survivors of childhood cancer,” the authors write.

In an accompanying editorial, Kevin C. Oeffinger, M.D., of
Memorial Sloan-Kettering Cancer Center, New York, and
Leslie L. Robison, Ph.D., of St. Jude Children’s Research
Hospital, Memphis, Tenn., write that it is important for
physicians to understand the possible subsequent health
problems for childhood cancer survivors.

“… most primary care physicians, as well as surgeons,
obstetricians, cardiologists, and other specialists, are
not familiar with the health risks of this relatively
heterogeneous population. Hence, as these survivors enter
their young and mid-adult years, a period when their risk
for many serious late effects is at its highest, they might
not be screened for various late effects that may be
modifiable or amenable to early diagnosis and treatment.”

“It is critically important for physicians to recognize
these risks, facilitate risk-based health care, and strive
to improve therapy that not only improves cure rates but
also reduces long-term morbidity.”

In a related article published in the same edition of the
journal, researchers observed that it is becoming more
common for children with complex chronic conditions to die
in their home than in a hospital, although black and
Hispanic children with these conditions are less likely to
die in their home2. Chris Feudtner, M.D., Ph.D., M.P.H., of
Children’s Hospital of Philadelphia, presented the findings
of the study at a JAMA media briefing in New York.

Many pediatric palliative care clinicians suggest that the
preferred place of death, by the family, of an infant,
child, or adolescent with a medically complex chronic
condition is the home. Advances in home-based medical
technology and changes in attitudes about pediatric
palliative care and hospice services may be making this a
more viable option, according to background information in
the article.

Dr. Feudtner and colleagues conducted a study to determine
if the proportion of complex chronic condition-related
deaths occurring at home among children and adolescents
increased between 1989 and 2003, and to assess if there
were any race and ethnicity disparities in the location of
death. The researchers analyzed data from the National
Center for Health Statistics’ Multiple Cause of Death

Among the 22.1 percent of deaths (198,160 of 896,509 total
deaths) attributed to a complex chronic condition between
1989 and 2003, the percentage of deaths occurring at home
increased significantly for all age groups (overall, from
10.1 percent in 1989 to 18.2 percent in 2003), but with
larger increases for deaths beyond infancy. The odds of
death occurring at home increased by 3.8 percent annually.

The percentage of individuals dying at home increased
significantly over time for infants (4.9 percent home
deaths in 1989 to 7.3 percent in 2003); 1 to 9-year-olds
(17.9 percent to 30.7 percent), and 10 to 19-year-olds
(18.4 percent to 32.2 percent). During this same period,
there was a significant decline in the percentage of deaths
occurring in the hospital for each of these three age

The authors suggest that this gradual change in place of
death may be occurring because of advances in medical
technology in the home setting and broad shifts in
attitudes and decision-making processes regarding
palliative and end-of-life care in U.S. culture.

The child’s race, ethnicity, and region of home residence
were significantly associated with death occurring at home.
The odds of dying at home were reduced by 50 percent among
black individuals, and reduced by 48 percent among Hispanic
individuals, when compared with whites.

Concerning possible reasons for the observed racial and
ethnic differences, “ … differential access to health care
services or medical technology, divergent cultural
attitudes or approaches to palliative and end-of-life care
decision making, or differing levels of financial or other
support within the patient’s or family’s social network may
make dying at home more or less likely.”

“… as efforts to improve understanding of the sources and
remedies of racial and ethnic disparities in pediatric
end-of-life care are completed, medical and other concerned
professionals need to ensure that all patients have access
to necessary care and that all dialogue and interactions
regarding decisions about care—whether curative,
life-extending, or palliative—are built on mutual
understanding, trust, and respect,” the authors conclude.

1. JAMA. 2007; 297:2705-2715.
2. JAMA. 2007; 297:2725-2732.