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Overview

This project will develop and evaluate a highly mobile form of information and support for parents of children undergoing hematopoietic (bone and marrow) stem cell transplantation (HSCT). Adapted from current CHESS modules, this module will be an interactive, web-based health information and support system for pediatric HSCT parents and their families for use during the extensive period of peri-transplant and recovery.

The Need

Hematopoietic stem cell transplantation (HSCT) is now the second most frequent major organ transplant in the US – an estimated 45,000 transplants are performed each year, with more than 2000 patients under 20 years of age. HSCT recipients and their families are extremely vulnerable as a result of the physical and psychological demands of the treatment, the geographic dislocation, and physical and social isolation. During the transplant recovery process, care shifts back from the transplant center to the child's home and local treatment center with the parents assuming the primary responsibility for the child's care. Traditional hospital-based interventions have focused on the transplant period, but given the prolonged and demanding period of recovery (6 to 12 months), alternative interventions are needed. To help manage the transitions during this time, we are developing a highly mobile transplant-specific module, adapted from other modules of CHESS, in order to help bridge the gaps in care inherent in geographical dislocation, social isolation, or transferring to different health care settings.

Details

Approximately 200 parents at four pediatric HSCT centers across the US will be invited to participate in this project. We will be evaluating the impact of the HSCT-CHESS module on health-related quality of life, compared to standard care over a nine-month intervention period. This project will also shed light on the application of wireless interactive health communication systems to a new population, for exploring the mechanism of action and identifying who may benefit most by this approach. This intervention also has the potential to serve as a model in other clinical situations in which complex care is shared by health care providers with different expertise in geographically distant sites, particularly those in which the patient and the family must be actively engaged in care coordination and disease management.

Principal Investigators:
David Gustafson Sr., Ph.D
Susan Parsons, Ph.D