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Participation in decision-making regarding follow-up care improves quality of life among breast-cancer survivors

For breast-cancer survivors, taking control over aspects of the course of their follow-up care may improve their quality of life, a new Fred Hutchinson Cancer Research Center study reports. The very act of deciding about bone scans, chest X-rays or blood tests improves the quality of life of survivors for many years.

"Cancer diagnosis and treatment are traumatic and important life events," says M. Robyn Andersen, Ph.D., an assistant member of the Hutchinson Center's Public Health Sciences Division. "Traumatic life events have effects that may persist for years. Involvement in decision-making helps women to deal with the traumas, and the influence continues long after cancer treatment ends." The research appears in the current issue of Annals of Behavioral Medicine.

Andersen and colleague Nicole Urban, Sc.D., a member of the Center's Public Health Sciences Divison, studied 292 breast-cancer survivors, ages 50 to 85. The women in this group were predominantly white, well-educated, and enjoyed a high quality of life. The researchers found that 56 percent of the survivors continued to undergo blood tests, X-rays, or bone scans five or more years after cancer treatment to determine whether their disease had returned.

There is no evidence to indicate that these tests improve post-cancer survival rates; leading cancer experts recommend mammography and clinical breast exams instead. However, some clinicians provide the additional tests simply to reassure patients and reduce anxiety.

The experience of taking the tests in and of itself did not appear to reassure those who decided to have them or reduce their worries about a relapse. However, survivors who participated in decision-making generally felt better, physically and emotionally, than those who did not.

"Physicians might improve their patients' quality of life by offering them the opportunity to make their own informed decisions about tests involved in follow-up care," said Andersen. "Physicians should discuss the value of mammography and clinical breast exams with patients and involve them in follow-up appointment scheduling."

Keeping breast cancer patients involved is a relatively new approach. More than half the participants in this study reported that they had been very involved in decision-making about their surgical treatment, and a similar percentage reported involvement in decisions relating to follow-up tests. Of women diagnosed 20 years ago or longer, 41 percent reported no involvement in surgical treatment decisions. Only 7.5 percent of women diagnosed three to five years ago remained uninvolved.

This research was supported by a grant from the U.S. Public Health Service Office of Women's Health as part of the National Action Plan on Breast Cancer initiative and by a grant from the National Cancer Institute.

Editor's note: Annals of Behavioral Medicine is the official peer-reviewed publication of The Society of Behavioral Medicine. For information about the journal, contact Arthur Stone, Ph.D., (516) 632-8833.

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The Fred Hutchinson Cancer Research Center is an independent, nonprofit research institution dedicated to the development and advancement of biomedical technology to eliminate cancer and other potentially fatal diseases. 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. The Hutchinson Center is the only National Cancer Institute-designated comprehensive cancer center in the Pacific Northwest. For more information, visit the Center's Web site at <www.fhcrc.org>.

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Fred Hutchinson Cancer Research Center is a world leader in research to prevent, detect and treat cancer and other life-threatening diseases.