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Extending a Lifeline - Researchers Collaborate with Local Organization to Help Cancer Patients and Their Families

yogayogaYou have breast cancer. These are four words no one wants to hear. Yet physicians will speak these words to one in eight women, according to the National Cancer Institute. Nursing Professor Frances Lewis and her research team are concerned with what women and their families do with the onslaught of medical information, treatment decisions and emotions that come after an initial cancer diagnosis.

"The evidence is that in a doctor's office after a cancer diagnosis, even if patients are calm, they actually only retain about 33 percent of what they hear," says Lewis, the Elizabeth Sterling Soule Endowed Professor in Nursing and Health Promotion. "I've talked to patients who know the names of the kind of estrogen receptors associated with their cancer, but they don't know if they should have surgery now or later."

Lewis and her research team focus on families experiencing breast cancer in mothers who are raising children. The team also partners with Cancer Lifeline, a Seattle-based organization, to address quality-of-life issues for patients and families dealing with various kinds of cancer.

Cancer Lifeline, founded by a cancer patient with recurring cancer, began as a telephone line/support system in 1973. Today trained volunteers respond to more than 3,000 calls each year, offering support and community resource referral. Cancer Lifeline also offers more than 30 classes and support groups at its Seattle location. A second location in Bellevue is slated to open in January 2004.

"Not unlike many patients with recurring cancer, the Cancer Lifeline founder felt she needed support for her illness, but that she couldn't ask her family and friends to go through it all over again," explains Ellen Zahlis, research consultant in family and child nursing and associate director of Cancer Lifeline. "The anonymous telephone support line is seen as less of a burden on loved ones."

Zahlis and Mary Ellen Shands, researcher with the Family Functioning Research Program at the UW and program associate at Cancer Lifeline, agree that their dual roles-studying the impact of cancer on the family while serving as staff for Cancer Lifeline-raises the level of work they do as a whole.

"I'm sure our programs and services at Cancer Lifeline are better informed because of the research we do and that our research findings are better understood because of our joint positions," Zahlis says.

Since Cancer Lifeline is not affiliated with a single provider, it is a dynamic organization able to seamlessly assess and incorporate input from Puget Sound cancer researchers, patients, care providers and families. Working with patients on the lifeline helps Zahlis and Shands better understand the patient and family experience.

"We get feedback from clients about how to make a difference and can actually apply this in Cancer Lifeline programs," explains Zahlis. "For instance, we offer gentle yoga and Qi Gong classes because patients told us that exercise makes them feel better. The scientific research is now backing that up. Listening to patients helps us design better study protocols. It works both ways."

Barbara Frederick, executive director of Cancer Lifeline, says, "There is no doubt that Cancer Lifeline programs benefit from our close relationship with the research team at the university. Having members from the research team who are also on staff here not only adds to our understanding of people's experience with cancer, it also results in more rigor in our evaluation of our programs."

Lewis' research team has conducted large descriptive studies, psychosocial interventions, and randomized clinical trials. In a recent study funded by a Dorothy S. O'Brien Cancer Lifeline grant, the research team analyzed interviews from mothers with breast cancer, focusing on how they communicated with their children about cancer and the children's worries. The study findings improved programs at Cancer Lifeline and became the basis for a clinical trial conducted by the research team.

"So many patients seeking support at Cancer Lifeline have diligently read the literature and have wonderful doctors," says Lewis. "It's not about medical care. It's about a better quality of life for cancer patients and their families."

Zahlis agrees: "We want to help cancer patients and their families cope with the illness and all its implications. We don't want them to just find a groove and muddle through. We want them to thrive as people and as a family."