Pediatric Cancer CareLink--supporting home management of childhood leukemia

We conducted a descriptive evaluation of an Internet-based system designed to support home management of childhood leukemia (Pediatric Cancer CareLink). Twenty-five parents of children with ALL and thirty-four clinicians were interviewed to identify functional requirements and to demonstrate the system's potential to improve the experience and outcomes of children with acute lymphoblastic leukemia (ALL). Parental interviews focused on: medication and side effect management in the home; communication with the health care team; and the use of a computer for ALL home management. Results from these interviews provide strong evidence that parents of children with ALL are struggling to manage the complexity of their children's care in the home. Parents revealed an urgent need for tools that would help them to safely organize the medicines that their children receive while on ALL protocols. Forty percent of parents needed to know more about what to expect during their child's therapy and how to be prepared for it. Clinician interviews focused on the clinical impact and workflow issues associated with such a system. Decision support, prescription refill management, and educational and emotional support functions were considered key components. Clinicians were concerned that such a system would increase their already overburdened workload. Conversely, parents believed that access to such a system would eliminate unnecessary phone calls to the care team. Our findings show that parents would embrace collaborative Internet-based tools that would help with the home management of their child's leukemia.