Majority of pediatric cancer patients use alternative therapies: Fred Hutchinson Cancer Research Center survey

SEATTLE — Oct. 31, 2001 — Nearly three-quarters of pediatric cancer patients in western Washington use alternative therapies to treat the cancer or cope with side effects from standard medical treatments, according to a survey conducted by the Fred Hutchinson Cancer Research Center.

The results of this survey — the first population-based study in the United States to look at alternative-medicine use in children with cancer — appears in the November issue of Preventive Medicine.

Marian L. Neuhouser, Ph.D., R.D., and colleagues in Fred Hutchinson's Public Health Sciences Division led the study, which was supported by grants from the National Cancer Institute and funds from Fred Hutchinson. Researchers at Bastyr University in Kenmore, Wash., also consulted on the project.

"The use of alternative medicine is well known among adult cancer patients, but until now, little has been known about the use of these therapies in children with cancer," said Neuhouser, a senior staff scientist in cancer-prevention research.

"The bottom line is that the majority of pediatric cancer patients in western Washington — 73 percent of those surveyed — are using some form of alternative medicine or therapy. In addition, most patients and their families report substantial improvements in health and well-being as a result of using alternative medicine," she said.

The survey was based on telephone interviews with the parents of 75 living pediatric cancer patients (ages 0-18 years) who had been first diagnosed with invasive cancer between February 1997 and December 1998. The patients were located through the Hutchinson Center's Cancer Surveillance System, a population-based registry of cancer incidence in western Washington that is part of a nationwide cancer registry funded by the National Cancer Institute.

Since there is no single, consistent definition of alternative medicine in the published literature or in the mind of the public, the researchers based their survey on the "domains" of alternative medicine described by the National Institutes of Health's National Center for Complementary and Alternative Medicine. To streamline the survey process, the researchers collapsed the domains into three subgroups:

• alternative providers (such as acupuncturists, massage therapists, naturopathic doctors or homeopathic physicians);
• dietary supplements (vitamin, mineral, herbal or other supplements, such as shark cartilage); and
• "other" therapies (diet or physical activity; mental and spiritual therapies such as prayer, meditation and support groups; and energetic interventions such as crystals and magnets).

Patients were considered a user of alternative medicine if they received care from an alternative provider within the past year or had used at least one alternative supplement or therapy.

The most pervasive form of alternative treatment among those surveyed was the use of herbal and high-dose vitamin supplements, which were used, respectively, by 54 percent and 59 percent of the patients, many of whom also used several such products simultaneously. "While the data are conflicting about harm or benefit regarding use of these products among children undergoing cancer treatment, some caution may be advisable," Neuhouser said.

For example, antioxidants such as vitamins C and E may reduce the effectiveness of chemotherapy, while herbs such as yew needle and the herbal tea essiac have been associated with heart and kidney impairment, particularly when taken in conjunction with certain cancer drugs.

"Anyone who is in active cancer treatment should communicate with their medical team about the use of vitamins and supplements, which may need to be curtailed during treatment," Neuhouser said.

At Fred Hutchinson, for example, registered dietitians ask patients not to use antioxidants while in active cancer treatment.

Because multivitamin use is often part of standard medical treatment, the researchers did not consider routine multivitamins as alternative. However, special formulations such as "antioxidant supplements," "stress supplements" and high-dose single supplements (such as vitamin C) typically contain nutrient doses hundreds to thousands of times higher than the Recommended Daily Allowance for children, and so were considered alternative.

More than 20 percent of patients surveyed received care from an alternative provider such as a naturopathic doctor, Native American healer or massage therapist.

The vast majority — 90 percent — of such alternative providers and mental therapies were used to treat cancer symptoms or treatment side effects. About a third of alternative providers and dietary supplements were used to prevent recurrence or spread of the cancer. The most common alternative intervention, however, was the use of herbs and dietary supplements to promote general health and treat non-cancer conditions, such as colds.

Other findings:

• Although use of alternative therapy was high, none of the parents surveyed had abandoned conventional cancer treatment for their child. In fact, there was a high level of satisfaction with standard medical care. "About 75 percent of all parents reported being very satisfied with their child's conventional treatment and they trusted their child's oncologist," Neuhouser said. "This finding should be reassuring to clinicians who fear that patients may refuse effective medical treatments in favor of alternative therapies."
• However, parents who were dissatisfied with their child's physician were nearly nine times more likely to have children who used alternative treatments compared to parents who were very satisfied with their child's doctor.
• Parents attributed substantial improvement in their child's health and well-being to alternative treatments and therapies. Between 60 percent and 90 percent reported improvements due to alternative providers, vitamin and herbal supplements, dietary changes, physical activity, and mental and spiritual therapies.
• There was no association between disease progression and use of alternative medicine, contrary to previous studies in adults that have found a positive relationship between the two. "I had expected that patients in a latter stage of disease would be higher users of alternative medicine, but that wasn't the case," Neuhouser said.
• Overall frequency of alternative medicine use was higher among white patients compared to minorities, and higher among middle-income families compared to those at the lower and higher ends of the socioeconomic scale.
• Contrary to previous studies of alternative medicine use in adults, most parents had discussed the use of alternative therapy with their child's physician. Among those who hadn't, all said they'd be comfortable doing so. In addition, among parents who reported that their primary physician was aware of their child visiting alternative providers, 25 percent reported that the suggestion to seek alternative care originated with their physician.

The results of this study suggest a high degree of integration between conventional and alternative treatment in the state of Washington. This may be due largely to the fact that health insurers are required by state law to provide coverage for licensed alternative providers. As such, the results of this survey may not be applicable to cancer patients in other states with less liberal coverage of alternative-health services, Neuhouser cautioned.

"Larger studies involving patients from multiple cancer registries throughout the nation are needed to determine whether specific alternative treatments are associated with improved clinical outcome or enhanced quality of life among children with cancer," she said.

"In the meantime, the findings from this study suggest that clinicians and researchers need to stay informed about the pros and cons of alternative therapies, talk to their patients about their various treatment options — including those considered alternative — and make referrals when appropriate. They also should document treatments from all sources – including those outside the formal medical system — and advise caution around the use of high-dose vitamins or herbal supplements, particularly during chemotherapy or radiation treatments."

Editor's Note
To obtain a copy of the paper, "Use of Alternative Medicine by Children with Cancer in Washington State" by Neuhouser et al., Preventive Medicine, Vol. 33, No. 5, 347-354, visit Preventive Medicine's web site at www.academicpress.com/pm or call the Library of Congress Photo Duplication Service at (202) 707-5640.

Media Contact
Kristen Woodward
(206) 667-5095
kwoodwar@fhcrc.org

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Fred Hutchinson Cancer Research Center
The Fred Hutchinson Cancer Research Center, home of two Nobel Prize laureates, is an independent, nonprofit research institution dedicated to the development and advancement of biomedical technology to eliminate cancer and other potentially fatal diseases. Fred Hutchinson receives more funding from the National Institutes of Health than any other independent U.S. research center. Recognized internationally for its pioneering work in bone-marrow transplantation, the center's four scientific divisions collaborate to form a unique environment for conducting basic and applied science. Fred Hutchinson, in collaboration with its clinical and research partners, the University of Washington Academic Medical Center and Children's Hospital and Regional Medical Center, is the only National Cancer Institute-designated comprehensive cancer center in the Pacific Northwest and is one of 38 nationwide. For more information, visit the center's Web site at www.fhcrc.org.