April 21, 2004
Two DFCI studies examine quality of life issues for survivors of Hodgkin's disease
Left to right: Working on one of the studies are (back row) Mary Cooley, Jacqueline Fawcett, and Christine Coakley, and (front row) Kathleen McDermott, Kecia Boyd, and Kristin Roper.
It's hard to go through treatment for Hodgkin's disease, a cancer of the lymphatic system most common in young people and those over age 55. The therapy can make one nauseated, tired, and bald, among other side effects. But resuming a normal life afterwards and facing the possible long-term consequences of treatment also pose challenges.
Two research projects are now under way at Dana-Farber — one by oncology nurses and the other by a clinical psychologist — to examine and improve the experiences of Hodgkin's patients and survivors. Each effort has won financial support from a prestigious national organization: the Oncology Nursing Society and the Lance Armstrong Foundation, respectively.
The investigations come at a time of heightened national interest in survivorship. The Centers for Disease Control and the Lance Armstrong Foundation, for example, are expected to release a joint report this month stressing the need to address the public-health concerns of America's almost 10 million cancer survivors.
In one DFCI project, four nurses are launching a study to examine young adults after they end their Hodgkin's treatment — and face other significant life changes, such as becoming independent and firming up career goals. The undertaking, supported by the Institute's Phyllis F. Cantor Center for Research in Nursing and Patient Care Services, has received a $10,000 grant from the Oncology Nursing Society Foundation, a nonprofit organization that promotes excellence in cancer nursing and care. The study's organizers hope to begin recruiting patients in May.
The pilot study will involve following some 45 adults, ages 21-40, for six months after their last treatment for Hodgkin's. Participants will be drawn from institutions within the Dana Farber/Harvard Cancer Center. Through surveys, phone interviews, and medical-record checks, the nurses will examine the survivors' quality of life (including physical symptoms, emotional distress, and intimate relationships), demographics, and what supportive-care services they use during their transition to "off-treatment."
Sharon Bober, PhD
Perini Clinic study
Meanwhile, clinical psychologist Sharon Bober, PhD, of the David B. Perini, Jr. Quality of Life Clinic at DFCI is examining another aspect of the Hodgkin's experience — that of young women facing the long-term effects of chest radiation received as part of their therapy.
Using a $150,000, three-year grant from the Lance Armstrong Foundation, she hopes to create an "intervention" such as a support/educational group to help these survivors, who are at increased risk of developing breast cancer later in life. The intervention will grow out of the information learned from focus groups Bober and her team will hold with survivors ages 20 to 40. Tapes from those focus sessions may also be turned into teaching tools.
"Preliminary data from [Dana-Farber oncologist] Lisa Diller, MD, and colleagues suggests that many of these young women not only underestimate their risk but may not be doing basic surveillance such as mammography," explains Bober, who joined the clinic in October 2002. "We want to understand why and look at the barriers they may face to getting preventive care."
Founded in 1997 by cancer survivor and champion cyclist Lance Armstrong, the foundation bearing his name strives to enhance the quality of life for those living with, through, and beyond cancer.
An estimated 7,900 people in this country will learn they have Hodgkin's disease this year, according to the American Cancer Society. Although the illness is considered curable if caught early, its treatment can eventually lead to secondary cancers, as well as sterility, thyroid conditions, or other long-term problems. The Perini Quality of Life Clinic offers services, workshops, and research to address the needs of this group and other childhood cancer survivors. More information can be found at http://www.dana-farber.org/pat/surviving/childhood/.
