David B. Perini, Jr. Quality of Life Clinic
Research
Patients and their families — past, present and future — are the ultimate beneficiaries of the services provided by and research conducted in the David B. Perini, Jr. Quality of Life Clinic. Perini researchers are helping to develop more effective, less toxic treatment strategies for children, while at the same time are finding ways to combat the long-term side effects of harsh chemotherapy and radiation treatments — all in an effort to provide the best possible quality of life for the growing number of childhood cancer survivors. Below is a list of some of our research.
As more children overcome cancers and grow to adulthood, it is becoming increasingly important for the medical community to gather systematic data on survivorship and the long-term effects of childhood cancer treatment, even extending into middle age and beyond. The Perini Clinic is at the forefront of this area of research, directing a number of programs — local, regional, and national — dedicated to survivorship research. There are now over fifteen studies either ongoing or in development.
Screening Emotional Well-Being in Cancer Survivors
In March 2003, Dr. Recklitis, Tara O'Leary, PhD, and Dr. Diller published an article in the Journal of Clinical Oncology on the use of a brief screening test designed to look for signs of emotional distress in childhood cancer survivors. The test, which can be administered while the patient is in the waiting room before their provider appointments, may indicate whether a patient would benefit from further psychological testing and counseling. With support from the Lance Armstrong Foundation, Dr. Recklitis will open a nationwide study of a computerized version of the test in the next several months, in collaboration with other institutions such as the Roswell Park Cancer Institute in Buffalo and the University of Texas Southwestern Medical Center in Dallas. This version of the test will be particularly useful for survivorship clinics that do not have a full-time psychologist on staff.
Breast Cancer Chemoprevention for Hodgkin's Survivors
It is now well established that women who received radiation treatment for Hodgkin's disease are at an increased risk of developing breast cancer later in life. Dr. Diller and Judy Garber, MD, director of the Friends of Dana-Farber Cancer Risk and Prevention Clinic, have completed enrollment in a trial examining the effectiveness of using the drug tamoxifen to prevent the development of secondary breast cancer in these women. Results from this study were reported at the 2002 annual meeting of the American Association of Cancer Research.
Concurrently, Dr. Bober is examining decision-making processes in women at risk of breast cancer due to childhood cancer treatment. Through focus groups with survivors aged 20 - 40, Dr. Bober, with support from the Lance Armstrong Foundation, is unraveling the reasons why so few women are aware of the risk they face for breast cancer and looking at the barriers these women face to accessing preventive care. This study — the end goal of which is to develop interventions to help women access preventive care — is still in the enrollment stage.
Cardiac Effects of Sarcoma Treatment
Children suffering from sarcomas (a group of soft-tissue cancers) are often treated with anthracyclines — a class of chemotherapy drugs linked to an increased risk of cardiac damage. In August 2003, Dr. Grier and collaborators at Brigham and Women's Hospital received approval for a study to measure the long-term effects of anthracycline treatment on cardiac function in survivors of childhood sarcomas. This study has commenced recruiting patients.
Male Fertility After Childhood Cancer
Lisa Kenney, MD, MPH, is directing a nationwide study on the long-term effects of ifosfamide, a chemotherapy drug similar to cyclophosphamide, but potentially lacking the same toxicity and effects on male fertility. This study continues to accrue patients, and an arm of the study has been opened at Memorial Sloan-Kettering Cancer Center in New York City.
Late Effects in Very Long-Term Survivors
As survivors of childhood cancers live longer and become a larger segment of the population, very late effects of treatment are now becoming apparent. Dr. Kenney recruited survivors over age 50 for a study intended to help determine the very late effects of treatment and whether childhood cancer treatments can exacerbate age-related diseases. The study uses a questionnaire aimed at gathering information on second cancers and effects on survivors' children as well.
The Childhood Cancer Survivor Study (CCSS)
Through the years, Dana-Farber and the Perini Clinic have collaborated with the University of Minnesota as part of the Childhood Cancer Survivor Study, an NCI-sponsored study of over 14,000 survivors first diagnosed as children between 1970 and 1986. The study was recently extended through 2004 and expanded to include survivors diagnosed between 1987 and 1999.
The overall goals of the CCSS are to assemble a cohort of survivors large and diverse enough to characterize their experiences regarding delayed effects of treatment, and to gather information about health-related behaviors and patterns of medical care use. In the end, the CCSS will allow researchers to make recommendations on interventions and prevention strategies, and to better assess survivors' follow-up needs. Drs. Diller and Grier, along with Karen Emmons, PhD, and Frederick Li, MD, of the division of Population Sciences, have been instrumental in this study, and expect to increase their involvement to match the anticipated expansion of the study.
