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New OHSU Research Center Will Address Symptom Management in Life-Threatening Illness

   Portland, Ore.

The new Oregon Health & Science University Center for Research on Symptom Management in Life-Threatening Illness is scheduled to open Monday, Feb. 4. at 4 p.m. at the School of Nursing.

The National Institute of Nursing Research awarded the OHSU School of Nursing nearly $500,000 in start-up funds for the center. According to the school's dean, Kathleen Potempa, R.N., D.N.Sc., F.A.A.N., the center will enhance collaboration among individual researchers and research groups in the nursing school and across the disciplines, both at OHSU and in the community.

"We have significant expertise in this area. The center will help us build nursing research capacity and will give OHSU a competitive edge in recruiting top-notch faculty and graduate students," said Potempa.

The hour-long opening presentation will feature speakers the director of the new center, Lillian Nail, Ph.D., R.N., F.A.A.N., and Ann Knebel, R.N., D.N.Sc., F.A.A.N. Nail, the Dr. May E. Rawlinson Distinguished Professor and senior scientist, OHSU School of Nursing, will give the opening presentation. Knebel, program director, Office of Extramural Programs, National Institute of Nursing Research, will speak on "Research Centers: Building Knowledge Through Collaboration." Peter O. Kohler, M.D., president of OHSU, and Potempa will cut the ribbon on the new center.

Symptoms are part of the experience of serious illness. Sensations such as chest pain, shortness of breath, thirst and fatigue may be part of the body's way of telling us that something is wrong. These symptoms can also occur as a side effect of treatment. People with life-threatening illness such as cancer or heart disease, and those who are at the end of life experience many different, troublesome symptoms over long periods of time.

Even though some symptoms, such as pain, have been studied for decades, there are still big gaps in the knowledge needed to make people with life-threatening illness as comfortable and functional as possible. Nurse researchers, who focus on the science of care versus the science of cure, are looking for ways to fill those gaps and improve quality of life.

The federal money, along with donations from private contributors, gives the school three years to advance research in this area and position the center for continued federal funding. Center researchers will first tackle symptom management in heart disease, cancer and end-of-life care.

"We chose these areas because they represent areas of expertise within the school and touch the lives of most people in the United States," said Nail. Her research focus is on symptoms experienced by people with cancer.

Virginia Tilden, R.N., D.N.Sc., F.A.A.N., associate dean for research and the A.B. Youmans Spaulding Distinguished Professor, an expert on end-of-life care issues, is responsible for administering the center. "The School of Nursing is well positioned for national leadership in developing the science that will help people cope better and live more comfortably with life-threatening conditions, as well as achieve a more peaceful death," she said.

The new center is "an important addition to the National Institute of Nursing Research program," said Patricia A. Grady, R.N., Ph.D., F.A.A.N., director of the NIH institute. "It is the first NIH-funded center to study managing symptoms at the end of life, an area that only recently is being addressed in research. To improve how people experience dying, we must know a lot more about such issues as pain, use of feeding tubes, older people's experiences in their final days, family concerns, and monitoring symptoms leading to death."

Five pilot studies under way
Anne Rosenfeld, R.N., Ph.D., assistant professor of nursing, School of Nursing, studies the experience of heart disease in women. She will provide leadership for the pilot studies sponsored through the center.

The five initial pilot studies include:
Defining post-breast-cancer surgery pain.
Do some women develop widespread fibromyalgic-type chronic pain after they've had surgery for breast cancer? A group of fibromyalgia researchers led by Carol Burckhardt, R.N., Ph.D., professor of nursing, School of Nursing, will compare women with localized pain to those with widespread pain. This study will determine whether the widespread pain group exhibits characteristics of fibromyalgia. The group will also examine differences between those with localized and those with widespread pain. The investigators' long-term goal is to find ways to short-circuit the chronic pain that sometimes develops after surgery for breast cancer.

Understanding end-of-life care of elders in assisted-living and residential care facilities.
A study by Juliana Cartwright, R.N., Ph.D., associate professor of nursing, School of Nursing - Ashland Campus, expands on previous studies of family-member perceptions of symptoms and satisfaction with care near the time of their loved one's death. This work is important because assisted-living and residential care facilities are growing rapidly in Oregon. Her long-term goal is to identify opportunities for strengthening end-of-life care in these types of facilities.

Testing telenursing in congestive heart failure.
Patricia Patterson, R.N., Ph.D., assistant professor of nursing, School of Nursing, is examining the feasibility of using technology to evaluate symptoms in patients with heart failure. Because people with heart failure can experience fairly rapid changes in symptoms, it is important to have regular contact with them. She will examine the pattern of symptoms in patients with heart failure over 10 weeks and compare assessments of the patients' condition done by telephone alone to the same assessment done with a videophone (sound plus pictures) to determine which approach provides more useful information.

Characterizing symptoms associated with tube feedings in cancer patients.
Una Westfall, R.N., Ph.D., professor of nursing, School of Nursing, is studying symptoms that may accompany tube feedings used to provide nutrition to people who have difficulty eating because of cancer treatment and how the symptoms influence decisions patients make about administering their tube feedings at home. She hopes her findings can guide clinicians in preparing adult cancer patients for the experience of being fed through a tube.

Family perceptions of suffering at the end of life.
Susan Hickman, Ph.D., research assistant, School of Nursing, is leading a team that is examining the influence of physical symptoms on family perceptions of suffering at the end of life. Understanding the link between physical symptoms and other aspects of family perceptions of suffering is an important step in improving the care of the dying. This project will improve our understanding of the things that family members define as important in end-of-life care and suggest approaches for improving the family's experience with physical symptoms.

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