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Assessing the lives of transplant patients
Joanne Wolfe, MD, MPH, talking with a young bone marrow transplant recipient, looks for ways to improve the quality of life of children with advanced cancer.
Stephanie Lee, MD, MPH, who trained in hematologic oncology, has been scrutinizing the quality of life of patients who receive bone marrow or stem cell transplants. In December, she and collaborators at the Medical College of Wisconsin reported that patients who were suffering from depression six months after a bone marrow or stem cell transplant were three times more likely to die in the first post-transplant year than non-depressed patients. These findings could lead to improved care, says Lee, if further research indicates that transplant patients should be screened for symptoms of depression and treated if necessary.
In another area of interest, Lee reported last year that patients who underwent transplants often over-estimated their chances of cure, especially those who had advanced cancer. Ponders Lee, "I believe there is a role for hope and optimism in cancer treatment, but how do you make sure that people who want complete information about their chances of successful treatment are getting it?"
If they survive, what kind of life will transplant patients have? There had been little information on this until Lee and her colleagues did outcomes studies showing that most recipients returned to their pre-transplant functioning, a finding that somewhat surprised the researchers. "On the whole, people tell us they do recover and life gets back to normal after a transplant," she says.
One of the center's most widely publicized studies was one Wolfe published in 2000, in which she found that many children who died of cancer experienced substantial suffering. This raised questions about how well physicians and parents communicated about end-of-life issues. The earlier parents and medical teams accepted the terminal nature of a child's illness, the more likely it was that palliative care would be integrated into treatment. These findings (early data came out in 1997) led Wolfe and others at Dana-Farber and Children's Hospital Boston to establish a palliative-care service known as the Pediatric Advanced Care Team (PACT) that advises medical staffs on how to make children with late-stage cancer more comfortable. This shows how outcomes research can make a difference in care, she says.
In a study focused on bioethical issues, Joffe and Weeks recently reported that patients who volunteered for clinical trials of cancer treatment often misunderstood the trials' purpose (see page 18). Joffe is following up the study to analyze how the informed-consent process is carried out, and "to bring additional attention and resources to trying to improve people's understanding."
The most ambitious outcomes research effort on the center's plate this winter is Weeks' participation in a five-year federal study — Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) — aimed at uncovering disparities in medical care stemming from demographic differences among patients (see page 25).
The center headed by Weeks is not alone at Dana-Farber in studying treatment outcomes and impacts. At the David B. Perini, Jr. Quality of Life Clinic, for example, Lisa Kenney, MD, MPH, of Pediatric Oncology leads a project examining the lives of "very long-term" cancer survivors — people successfully treated for childhood cancers who are now in their 50s, 60s, and beyond. Also active in research on outcomes is Eric Winer, MD, of Adult Oncology. A breast cancer specialist, he headed a recently completed pilot study on psychosocial issues in survivors of breast cancer, and he is also studying women who have been newly diagnosed with ductal carcinoma in situ (DCIS).
Weeks says that at Dana-Farber, where most research is devoted to fighting cancer, outcomes studies help the Institute maintain a "balanced portfolio."
"Going for the cure is incredibly important," she says, "and 100 years from now, if you look back, the cure is going to come out of the lab. But, in the meantime, the goal of outcomes research is to make sure we give the very best treatment available to the maximum number of people now."
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