"If you build it, they will come," is how Anna Meadows, M.D., the acting director of the Office of Cancer Survivorship, describes the organization that, since its inception at the National Cancer Institute in 1996, has pioneered research on the growing number of people who survive cancer.
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"What we're doing is strengthening the foundation by continuing to study the problems that survivors face, and to learn how our interventions . . . can make a difference, then to try them in larger groups and to measure what we have done," Meadows told a group of researchers and patients at the 1999 Annual Workshop on Cancer Survivorship Research.
In fall 1998, NCI allocated $15 million over 5 years for research on the physical and emotional well-being of people who are 5 or more years beyond a cancer diagnosis. Several of the recipients of these grants were at the workshop to present preliminary research on those research projects or other related work.
One theme throughout the 2-day conference was how cancer affects the family unit.
Frances Marcus Lewis, Ph.D., of the University of Washington School of Nursing in Seattle, presented data on an intervention program directed at couples dealing with early stage breast cancer. The couples were counseled in their own homes three times over the course of 3 months, and were given instructional videotapes and booklets.
"The experience of cancer is defined and sustained as part of a relationship network," Lewis said. "The family is experiencing the pressures, but those pressures are not mobilizing coping behaviors. These pressures increase depressed mood, create marital tension, and once marital tension is in place, the household is compromised in its functioning."
While the program did not substantially decrease the illness-related pressures evident in the relationships, husbands, who are largely absent from intervention-related research, showed a decrease in level of depressed mood. Preliminary results also showed that the intervention stabilized the couples' appraisal of the marital adjustment to cancer.
Distress Symptoms
The stress of cancer on family relationships as well as on the cancer patient can lead to long-term impacts. Anne Kazak, Ph.D., of Children's Hospital of Philadelphia, is researching distress symptoms in families of adolescent survivors of childhood cancer.
"Cancer is traumatic for many different reasons," Kazak said. "There are repeated invasive procedures, a life threat, feelings of helplessness, and the incredible disruption to individuals and families over time."
In Kazak's pilot intervention study, 19 families participated in a 1-day program that involved four sessions with a psychologist, social worker, or nurse. The sessions included discussions on how cancer has affected the family, coping skills, and moving on after cancer.
Less Anxiety
Results of the pilot study show that the intervention program decreased symptoms of post-traumatic stress and anxiety. It also indicates that group therapy and discussion may be a positive experience for families of cancer survivors, Kazak said.
Presenters addressed issues such as physical and mental health after cancer treatment, ethical considerations of genetic testing, legal aspects in cancer survivorship, and fertility problems cancer patients may face.
One of the functions of cancer survivorship research is to provide information on late medical effects of treatment. Patricia Ganz, M.D., of the Jonsson Comprehensive Cancer Center in Los Angeles, stressed the importance of establishing funding mechanisms to support this kind of research.
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But the overriding theme at the workshop was how to take what researchers know now and develop it even further.
Julia Rowland, Ph.D., of the Georgetown University Medical Center in Washington, D.C., listed some suggestions for future research in cancer survivorship: evaluating the impact of cancer on the family; exploring the role of optimism in the outcome; determining the economic costs of survivorship; embedding the quality of life assessment throughout cancer treatment; and encouraging more researchers to enter this field.
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"What I'd like to see in the next few years is implementing what we've learned, to intervene, not just with the design of clinical trials, but with the intervention approaches during treatment that lead to a better quality of survival," Meadows said.
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