TUESDAY, Sept. 23, 2003 (HealthDayNews) -- Survivors of childhood cancer are much more likely than their healthy siblings to suffer from a variety of health problems when they reach adulthood.
The increased risk was particularly pronounced among women, those with lower educational levels, and those with low household incomes.
These results, from an unprecedented study of almost 10,000 cancer survivors, appears in the Sept. 24 issue of the Journal of the American Medical Association.
Because survival rates for childhood cancers are now upwards of 78 percent, the number of people who have lived five or more years beyond their initial diagnosis is growing. For the first time, scientists and the world can see the long-term consequences, which can include second cancers, heart disease, infertility, obesity and psychological distress.
The authors of this study compared the health status of 9,535 adult participants of the Childhood Cancer Survivor Study with 2,916 of their siblings. All of the cancer survivors had survived at least five years after their diagnoses. Six areas of health were assessed: general health, mental health, functional status, activity limitations, cancer-related pain and cancer-related anxiety or fears. The first four areas were assessed in the sibling control group.
Participants were asked to give their own perceptions of their health status, something that distinguishes this study from many others.
According to this self-reported data, cancer survivors were 2.5 times more likely to report adverse general health, 80 percent more likely to report mental health problems, 2.7 times more likely to report limitations in activity, and 5.2 times more likely to report functional impairment, compared with their siblings.
Compared to male survivors, females were 40 percent more likely to report at least one adverse health effect, 20 percent more likely to have general health problems, 40 percent more likely to have functional impairment, 70 percent more likely to suffer activity limitations, and 60 percent more likely to suffer from anxiety.
Survivors with a lower educational level were 2.6 times more likely to have general health problems, while those with an annual income of less than $20,000 were 1.8 times more likely to report such problems.
Almost half (44 percent) of the survivors reported adverse effects in at least one of the six areas. On the other hand, only 10.9 percent perceived they had impaired health. "The vast majority perceived their health as very good, which is testimony to how resilient they are after this experience," says study author Dr. Melissa Hudson, director of the After Completion of Therapy Clinic at St. Jude Children's Research Hospital. "[Having cancer] affects them emotionally, psychologically and physically, and the vast majority are able to move beyond that cancer experience and adapt to whatever chronic illnesses or disabilities they have."
But the U.S. health-care system is not set up to handle the long-term health problems that do arise.
"There's really not a very good system in this country for providing long-term care," says Dr. Cindy L. Schwartz, author of an accompanying editorial and an associate professor of oncology and pediatrics at the Johns Hopkins Kimmel Cancer Center in Baltimore. Kids with cancer become adult survivors who are no longer allowed by health insurers to visit their treating institution. Many adults move to other geographical locations. At the same time, Schwartz adds, the disease and treatments tend to be unique and most primary-care providers do not have the knowledge or experience to deal with them.
In some cases, the idea of long-term survivors is relatively new, so experts aren't even sure what to expect.
"It's an ongoing, moving target," Schwartz says. "The problem with late effects is that many are things that don't show up for 10 or 15 years . . . It would be nice to be able to prepare [survivors] as to what they might expect."
As it stands, however, good mechanisms for such follow-up do not exist. "We're trying to make the medical community aware of this," Hudson says. "This is such a small percentage of each individual primary-care provider's practice. We want to make this as easy as possible for primary-care providers. We want them to know where resources are without becoming an expert."