EMBARGOED FOR RELEASE:
Wednesday, Feb. 2, 2000, 5:00 PM EST
Contact: Todd Ringler, Dana-Farber Cancer Institute, 617-632-5357
Bess Andrews, Children's Hospital, 617-355-5332
NEW STUDY FINDS SUBSTANTIAL SUFFERING AMONG CHILDREN WITH CANCER AT THE END OF LIFE
Better symptom management in children dying of cancer may improve quality of life
BOSTON - For pediatric cancer patients, the primary goal of treatment is often to cure. Consideration of the toxicity of the therapy or the patient's quality of life is often secondary to this goal. Still, about 25 percent of children with cancer die of their disease.
A study by researchers Dana-Farber Cancer Institute and Boston's Children's Hospital in the February 3 issue of the New England Journal of Medicine shows that, according to their parents, many children who die from cancer experience substantial suffering in the last month of life. The study is one of the first efforts to measure the success of palliative care, the type of care that focuses on control of symptoms and quality of life, in pediatric patients.
"Since caregivers are very committed to curing their patients, it may be difficult for them to recognize when to incorporate palliative care into treatment efforts-even when there is little hope of cure," says Joanne Wolfe, MD, MPH, Instructor in Pediatrics at Harvard Medical School, Dana-Farber Cancer Institute and Children's Hospital, and lead author of the study.
Researchers interviewed 103 parents of children who had died of cancer between 1990 and 1997, and asked about the child's experiences with pain, poor appetite, nausea and vomiting, constipation, diarrhea, shortness of breath, or fatigue in his or her last month. Parents were also asked to rate their child's degree of suffering from each symptom.
The study found that 89 percent of the children experienced substantial suffering from at least one symptom, and over 50 percent experienced suffering from three or more symptoms. Parents reported that while efforts had been made to treat some of the symptoms, these efforts were successful less than 30 percent of the time. One positive finding was that children whose primary oncologist remained actively involved in the care of the child at the end of life experienced less suffering from pain.
"A number of studies have looked at quality of care at the end of life in adults, but there has been very little work done in this area with pediatric patients. We felt we needed to look at those same issues in children, and our results suggest that there is room for improvement in palliative treatment for children who have advanced disease," says Jane Weeks, M.D., Associate Professor of Medicine at the Dana-Farber Cancer Institute and Harvard Medical School, and the study's senior author.
Based on early data from this study, in 1997, Wolfe led the effort at the Dana-Farber Cancer Institute and Boston Children's to establish a pediatric palliative care service known as PACT -- the Pediatric Advanced Care Team. This multidisciplinary team advises caregivers of children with advanced disease about ways to manage symptoms and improve quality of life. PACT members also help to coordinate care in the inpatient, outpatient and home care settings. In addition, PACT members lead teaching sessions, and are developing new ways to care for these children and their families.
"The study data bear out what we were seeing anecdotally and inspired us to create PACT. Our team consists of caregivers from many different disciplines committed to maximizing comfort in children with life-threatening illness, while supporting families' wishes to pursue treatments aimed at controlling the underlying disease. PACT helps us step back, regroup, and refocus on the child's overall experience," says Wolfe.
Staff at Dana-Farber and Boston Children's have worked together since Dana-Farber's founding in 1947 to provide a closely collaborative plan of care for children with cancer. Inpatient care is provided at Children's and outpatient care at Dana-Farber. Boston Children's Hospital and Dana-Farber Cancer Institute are two of the nation's premier pediatric medical centers. Both are teaching affiliates of Harvard Medical School and each is home to a leading research enterprise.
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