March 7, 2002
Symposium on cancer-survivor research looks at long-term health
effects of disease
Christoper Recklitis, PhD, MPH, addresses the seminar
When Christopher Recklitis, PhD, MPH, began his position as chief psychologist at the David B. Perini, Jr. Quality of Life Clinic in 1998 after previously working in the Jimmy Fund Clinic, he assumed that he would be able to educate himself about the psychology of adult survivors of childhood cancers by surveying scientific literature on the subject. He was in for a disheartening surprise.
"Instead, I found that the literature was very limited and that I needed to do some of the basic studies myself that I had imagined had already been completed," he recalls.
Recklitis recounted this story during a Feb. 14 symposium focused on proposed and ongoing research looking at long-term health effects and quality of life for cancer survivors. Titled "Works in Progress in Cancer Survivorship: Focus on Psychological Sequelae and Quality of Life," the symposium in the Longwood Galleria drew investigators and caregivers from throughout the seven participating institutions of the DF/HCC. It was sponsored by the DF/HCC Program-in-Development for Childhood Cancer Survivor Research.
Because survival rates for childhood and other cancers are growing, research on this unique population's long-term health and psychological effects is an exciting new field and presents an opportunity to do groundbreaking work, reflected many of the researchers in attendance.
Presentations about current and proposed studies covered a range of topics. Although many of the results discussed are still preliminary, the studies all showed a valuable and concerted effort to fill some of the gaps Recklitis discovered in his literature search a year ago.
Among the examples include Recklitis' own research into the psychological health and health behaviors of young adult survivors. Susan Parsons, MD, is measuring the differences between parents' perceptions of how their children are faring as they go through bone marrow transplantation and the children's own views on their progress.
Karen Emmons, PhD, of Adult Oncology, who discussed her ongoing study of an intervention to help adult survivors of childhood cancer quit smoking, found that "survivor identity is key." This is clear in the smoking-cessation plan that Emmons is testing, in which anti-smoking materials are tailored directly to survivors. The intervention, one of the first of its kind, resulted in a doubling of quit rates among those who received the materials, she reported.
Mary-Ellen Meadows, PhD, of Brigham and Women's Hospital and Richard Gelber, PhD, of Biostatistical Science are conducting research on the effects of treatment for childhood acute lymphoblastic leukemia (ALL). Meadows is looking at the long-term neuropsychological after-effects among adult survivors, while Gelber is focusing on quality of life issues for children, both during and after therapy.
One of the challenges inherent in conducting research is finding enough participants for a study, said Judy Garber, MD, of Adult Oncology. She is now working on a pilot study to examine whether the drug Tamoxifen reduces the risk of breast cancer among women who have had Hodgkin's disease (also called Hodgkin's lymphoma). To join, survivors must be at least five years off treatment, have finished bearing children, and accept the possible side effects of the medication. To date, Tamoxifen has been shown to reduce the risk of breast cancer in women at high risk for other reasons besides Hodgkin's disease. This will be the first known study in which Hodgkin's disease survivors will be offered the drug.
Andrea Ng, MD, MPH, of Radiation Oncology, meanwhile, welcomed suggestions from colleagues on how to pursue survivors who don't respond to her study, which involves completing a 40-page questionnaire on complications from effects of Hodgkin's disease. Ng hopes to describe the long-term health issues and quality of life among a large number of Hodgkin's disease survivors, eventually to improve their medical care.
And Harold Burstein, MD, PhD, of Adult Oncology described the challenges and opportunities in creating Beyond Cancer, a new clinical program for women's cancer survivors. The program is designed, he said, to give women outside Dana-Farber/Partners Cancer Care "a chance to come in, discuss what issues they may have, and get a sort of tune-up."
Encouraging attendees to participate and ask questions, Perini Clinic Medical Director Lisa Diller, MD, told the audience that "the floor is almost continuously open." Her comment could also be a statement on the collaboration and networking that the Program-in-Development for Childhood is trying to foster. According to Diller, the project is committed to making significant contributions to the research on long-term health and quality of life effects for cancer survivors.
(Inside the Institute, March 5, 2002)
