St. Jude helps Brazil improve outcomes of children with leukemiaSt. Jude Children's Research Hospital has significantly reduced the rate at which families in Recife, Brazil abandon treatment for their children who have acute lymphoblastic leukemia (ALL), and has significantly increased the rate of event-free survival during a single decade. Event-free survival is the length of time after treatment that a person is free of treatment side effects, cancer recurrence and other problems.
The St. Jude program in Brazil decreased the rate of abandonment from 16 percent to 0.6 percent and increased event-free survival from 32 percent to 63 percent, according to Raul Ribeiro, M.D., a member of Hematology-Oncology at St. Jude and director of its International Outreach Program (IOP). Families abandon treatment for a variety of reasons, Ribeiro said. "The cost of treatment, stress of traveling to a distant hospital and lack of local housing and employment can discourage parents from seeing their child through the long treatment process," he said.
The program not only established an efficient pediatric cancer care unit where children received continuous care from the same caregivers, but also initiated psychosocial programs and generated community involvement, said Ribeiro, who presented a report on this program at the annual meeting of the American Society of Clinical Oncology in Atlanta, Georgian on June 4, 2006.
The improved outcome in Brazil is significant because it is a model program for reducing the disparity in cure rates between high- and low-income countries, Ribeiro explained. While the cure rate for ALL is 80 percent in high-income countries, the rate in low-income countries usually does not exceed 35 percent. "This low cure rate is especially alarming because 80 percent of the world's children live in low-income countries," Ribeiro said.
The program provides psychosocial support to patients and their families through subsidized transportation to the health care facility, provision of food and living quarters and access to work opportunities that reduce the economic impact on families who relocated to stay with their child.
"It's very important to provide psychosocial support to families to see them through the emotional upheaval of their child's cancer treatment," said Scott Howard, M.D., an assistant member of Hematology-Oncology at St. Jude and director of IOP clinical trials.
The St. Jude program also sought to reduce death from toxicity, which is the second most common cause of treatment failure after abandonment, Howard said. Among the practices St. Jude introduced was reducing the intensity of induction (initial) chemotherapy. Since most deaths are due to infections that occur after treatment weakens patients' immunity systems, the program established guidelines for rapid treatment of infections with antibiotics and arranged for high-risk patients to live in a nearby guest house so they have close access to the hospital.
In addition, the program trains local citizens to track patients and families in order to maintain connections between families and the health care facility; trains social workers, nurses and doctors to educate patients and families about critical aspects of cancer and cancer care; and helps raise money from the Brazilian government and non-profit foundations to subsidize the cost of chemotherapy drugs.
"We worked with NACC, the local foundation, to introduce strict treatment guidelines and establish reliable supplies of chemotherapy drugs," Howard said. "We tried as much as possible to import a fully developed care plan and put in place permanent psychosocial and financial support systems to help families concentrate on supporting their child through therapy."
St. Jude Children's Research Hospital
St. Jude Children's Research Hospital is internationally recognized for its pioneering work in finding cures and saving children with cancer and other catastrophic diseases. Founded by late entertainer Danny Thomas and based in Memphis, Tenn., St. Jude freely shares its discoveries with scientific and medical communities around the world. No family ever pays for treatments not covered by insurance, and families without insurance are never asked to pay. St. Jude is financially supported by ALSAC, its fund-raising organization. For more information, please visit www.stjude.org.
Last reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
Published on PsychCentral.com. All rights reserved.