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Childhood Cancer Survivors at Increased Risk

July 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 
article. 
 
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 
Files. 
 
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 
categories. 
 
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.