Web support system will help families of pediatric transplant patients

Tufts-New England Medical Center, the teaching hospital affiliated with the School of Medicine, has received a five-year grant from the National Cancer Institute to develop and study web-based interventions to help families of children who receive bone marrow, cord blood or blood stem cell transplants.

Dr. Susan Parsons, associate professor of medicine and director of Tufts-NEMC’s Center on Child and Family Outcomes, is the principal investigator on the grant. She’ll work with collaborators from the University of Wisconsin and the Blood & Marrow Transplant Information Network, a nonprofit that provides medical information in easy-to-understand language so that patients can be active, knowledgeable participants in their health-care treatment.

“During the transplant recovery process, care shifts back from the transplant center to the child’s home and the local treatment center, with the parents assuming the primary responsibility for coordinating the child’s care,” Parsons said. “Given the prolonged and demanding period of recovery (six to 12 months), alternative interventions are needed.”

To address these issues, investigators at Tufts-NEMC will develop an interactive, web-based health information and support system for pediatric transplant patients and their families. The program will be adapted from a University of Wisconsin program, called the Comprehensive Health Enhancement Support System (CHESS), and include editorial contributions from the Blood & Marrow Transplant Information Network.