Personalized Engagement Tool for Pediatric BMT Patients and Caregivers

Blood and marrow transplantation (BMT) is a major event that impacts physical, psychological, and social well-being. Based on the intense, physically demanding procedure, medically fragile pediatric BMT patients remain dependent on caregivers during prolonged inpatient care. As such, it is critical that caregivers are informed and involved in the delivery and coordination of care. There is a need to promote timely, effective, and safe patient-centered practices for BMT patients facing life-altering medical decisions. Consumer health informatics offer the potential to build a partnership with parents to overcome constraints in healthcare delivery limited by provider time, complicated health information, and financial pressures. However, significant gaps in knowledge exist on the use of health information technology (IT) tools in routine inpatient care, especially for high-risk or critically ill populations.

This project developed and evaluated BMT Roadmap, a tablet-based acute patient portal that displays personal health information and provides a platform to promote parent engagement and enhanced communications between families and providers. Researchers addressed the role of an acute care portal in patient and caregiver co-management of care, allowing parents to draw from the tool to hold more in-depth discussions with their children’s providers and other family members.

The specific aims of the project were as follows:

• Generate an understanding of user needs in the development of a tablet-based patient-centric health IT tool (BMT Roadmap) for caregivers of pediatric patients undergoing BMT. 
• Conduct a pilot and feasibility study of BMT Roadmap in caregivers of patients undergoing BMT. 

Researchers analyzed patient and caregiver information needs to inform user-centered design and development of the BMT Roadmap. The patient portal includes domains for: laboratory results, medications with plain-language summaries, clinical trial summaries and consent documents, healthcare provider directory, phases of care, and a discharge checklist. Findings suggested that the BMT Roadmap was well received and considered useful, and that there were no patient privacy or safety concerns. Survey results showed that patient and caregiver anxiety was decreased, caregiver quality of life was improved, and caregiver activation was increased at discharge when compared with baseline. They also found that patient activation increased throughout the study period. Investigators believe future work should include expansion of the tool to the home and outpatient settings, thereby broadening the scope of its applicability.