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Newsletter >
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.
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