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Childhood Cancer Survivors: Largest Study to Date Assesses Long-Term Effects & Impressions

Fogarty, Mary

doi: 10.1097/01.COT.0000290749.97083.37

What happens to young adult survivors of childhood cancer? How long are they affected by the impact of the cancer and its treatment, and what new problems do they face as they grow into adulthood?

Results from the Childhood Cancer Survivor Study, the largest assessment ever to examine these issues, were recently published in the Journal of the American Medical Association (2003;290:1583–1592) and showed that although in general survivors perceived themselves to be in good health, there were many deficits in specific health areas.

This was only the second such study to consider both the medical and the psychosocial sequelae in these survivors.

The study was led by Melissa M. Hudson, MD, Director of the After Completion of Therapy Clinic at St. Jude Children's Research Hospital.

The 9,535 participants, survivors treated at 25 pediatric cancer centers across the United States and Canada, were questioned about six specific health domains:

  • General health.
  • Mental health.
  • Functional status.
  • Activity limitations.
  • Cancer-related pain.
  • Cancer-related anxieties and fears.

A group of 2,916 randomly selected siblings were also questioned about the first four areas.

A mere 10.9% of the survivors considered themselves to be in only fair or poor health, but a significant 43.6% were found to be suffering some long-term or late effects of their childhood cancer or its treatment.

Survivors of pediatric bone tumors, central nervous system tumors, and sarcomas were the most widely affected across the domains, and were shown to be at increased risk for adverse health when compared with leukemia survivors.

Survivors age 35 or older were also more likely to report adverse outcomes across all the domains. And the main sociodemographic factors consistently associated with adverse outcomes included being female, having lower levels of educational attainment, and possessing a household income of less than $20,000.

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Medical & Psychosocial Sequelae

One of the important features of the study, as Dr. Hudson and her coauthors point out, is that it is only the second to consider both the medical and the psychosocial sequelae in these survivors.

And an accompanying editorial by Cindy L. Schwartz, MD, Clinical Director of the Division of Pediatric Oncology at Sydney Kimmel Cancer Center at Johns Hopkins Hospital, highlights that the study, unlike most investigations of long-term outcomes, is based on the perceptions of the survivors.

Dr. Schwartz noted that such self-reporting and perceptions have been shown in studies of post-traumatic stress, for example, to be more predictive of problems than objective ratings by medical professionals.

Survivors' perceptions vary enormously, Dr. Hudson said in an interview. “You see survivors who have a lot of physical disabilities, and yet their perception is that they're doing very well—because they are happy to be alive, they've adjusted, and they are very resilient. But then there are others who still have a lot of emotional and psychological trauma from their cancer.

“It is so multi-faceted how survivors adapt and adjust following cancer experiences—we can't really presume as clinicians to judge how patients are going to do.”

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More Problems with Bone & CNS Tumors than with Leukemia

The study revealed that those patients treated for a bone or CNS tumor were far more likely to report a negative impact on their long-term health than those treated for leukemia.

They were also more likely to report limitations in performing daily activities and pain as a result of the cancer or its treatment.

This is not surprising, Dr. Hudson said, considering the aggressive surgery, and intensive radiation and chemotherapy to which they are subjected. But she points out that even though certain of the survivors in the study would say that they had pain, functional activity limitations, and so on, often they still perceive that they have very good health.

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It has a lot to do with the sociodemographic factors revealed by the study, Dr. Hudson remarked. The main factors—being female, having low levels of education and of household income—are also associated with many health problems in the general population, including mental health. And the study found that “moderate to severe impairment in some aspect of mental health” was present in all the diagnostic groups.

“These are groups of our society that have trouble with every aspect of health,” Dr. Hudson said. “For example, they don't have access to resources, and their families can't help them rehabilitate optimally.”

Older age was also associated with adverse health outcomes in cancer-related pain, functional impairment, and activity limitations in all the disease groups questioned.

The reasons for this could be twofold, the researchers said—the earlier treatments for cancer produced more morbidity than contemporary therapies, and a higher degree of chronic disability may well just develop in aging survivors.

But Sharon B. Murphy, MD, Director of the Children's Cancer Research Institute at the University of Texas Health Science Center at San Antonio, points out that many of the participants were treated in the 1970s: “Treatments now have gone through an evolution and are much less likely to produce acute toxicity and long-term side effects,” she said in an interview.

“It's a moving target—the long-term consequences change with the era. And the general health of the population gets worse as it gets older anyway. And if you take into account the sociodemographic factors here, there are issues like cigarette smoking, substance abuse, obesity, hypertension—all of which contribute.”

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Preparing Clinicians in Primary Care

Dr. Hudson is keen to emphasize that the findings indicate that in large part adult survivors of childhood cancer have a very good chance of living normal lives.

But the study also reveals a significant group of survivors who are going to be affected by their childhood cancer in adulthood, and clinicians need to be aware of this—and educate and prepare them for the problems they may face in adulthood.

The fact that there was such a huge cohort in this study has enabled it to discern the effect of how these other factors are influencing self-reported health perception, Dr. Murphy said.

“This takes long-term survivor research into other domains such as functioning and society, and it points to extra risk factors for health impairment which are important.”

Since there are increasing numbers of long-term cancer survivors, she stresses it will be important to develop risk models, making it possible to provide interventional services for those most at risk.

But Dr. Schwartz, in her editorial, points out that programs to assist adult survivors with long-term concerns may be difficult to find: “Minimal resources are available for these long-term programs, because they are time-consuming and not fully reimbursable.”

Although in general survivors of childhood cancer perceived themselves to be in good health, there were many deficits in specific health areas.

Dr. Murphy agrees: “There are many places around the country that treat children with cancer that struggle to put together the resources to organize long-term care.”

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Training Physicians in Primary Care

The problem is that there are just not enough well-trained people in the community, she continued. “You don't need an oncologist to take care of a survivor. You need a generalist—somebody who knows about the late effects of childhood cancer, and those people are pretty rare.”

Dr. Hudson said that often doctors in primary care are stymied about what to do. “Some are just so uncomfortable with the patients that they keep on encouraging them to go back to their oncology center—and if you were a pediatric patient, that's not an option when you're 40. The problem lies in the fact that we are not training our clinicians to be able to take care of this group. We need to develop training programs to do that effectively.”

But Dr. Murphy stresses that, before any such initiatives can be made in primary care, there must be evidence-based guidelines to work with. And she is not sanguine about where the funding for these is going to come from.

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Medicaid Managed Care Yields Lower Quality of Care

Performance scores on most indicators for quality of care for children and adolescents enrolled in Medicaid managed care programs are significantly lower than performance scores for children enrolled in commercial plans, according to an article in the September 17th issue of the Journal of the American Medical Association.

Many states have turned to commercial health plans to serve Medicaid beneficiaries and to achieve cost-containment goals. Assumptions that the quality of care provided to Medicaid beneficiaries through these programs is acceptable have not been tested.

A team led by Joseph W. Thompson, MD, MPH, of the University of Arkansas for Medical Sciences, conducted a study to determine if the quality of care provided to children in Medicaid managed care organizations is equivalent to the care provided to children in commercial managed care organizations.

The researchers used 1999 data collected through the Health Plan Employer Data and Information Set (HEDIS) and examined quality-of-care indicators for children and adolescents.

Results from 423 commercial and 169 Medicaid plans were compared. Matched pairs analyses were performed using data from each of the 81 companies serving both populations to control for corporate differences.

The quality indicators included prenatal care, childhood immunizations, well-child visits, adolescent immunizations, and myringotomy and tonsillectomy rates.

Using these indicators of clinical performance, children and adolescents enrolled in Medicaid received worse care compared with their commercial counterparts.

For most of the 81 health plans serving both populations, Medicaid enrollees had rates statistically significantly lower than commercial plans for clinical quality indicators; for clinical access indicators; and for common procedures. Conversely, some plans demonstrated equal and high-quality care for both populations, the authors noted.

© 2003 Lippincott Williams & Wilkins, Inc.
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