Implementation of a QoL Measure in Pediatric Transplant Recipients

Pediatric solid organ transplantation is relatively new, having only become fully available in North America over the last 30 years. Post-transplantation patients are generally stable but experience challenges, including emotional impact of the abdominal scar, cognitive impacts from immunosuppressant medications, and both the physical and emotional impact of potential organ rejection and the need for re-transplantation. While significant, many of these challenges are not visible to the care team. The use of quality-of-life (QoL) assessments improves communication between patients and physicians and has been shown to improve medication adherence. However, they have been slow to be incorporated into practice, despite families and patients advocating for their use.

This research will implement and evaluate the impact of integrating patient-reported outcomes (PROs) into clinical practice via an innovative platform designed for use by patients and their families. PROs will be collected using the Pediatric Liver Transplant Quality of Life (PeLTQL) tool, which is a QoL questionnaire that takes about 5 minutes to complete. The tool is typically conducted via pen and paper, but would be more widely adopted if available electronically. For this research, a health information technology (IT) platform called RealTime Clinic© (RTC) will be used to host the questionnaire, accessible via a smartphone or computer. The questionnaire will be completed prior to a visit by a parent and the child. Results will be available to the care team, including a “discrepancy score,” the difference between the parent and child responses. The research will take place at two transplant networks: the Starzl Network for Excellence in Pediatric Transplantation (SNEPT) with seven centers in North America, and the Society of Pediatric Liver Transplantation (SPLIT) with 40 centers in the United States, Canada, Australia, and India.

The specific aims of the project are: 

• RealTime Clinic customization.
• Implementation.
• Usability and impact.

In the first phase, RTC will be customized for use by SNEPT centers. Information on its usability as well as impact on patient outcomes—including adherence to medications and QoL—will inform modifications to the tool. This modified tool will then be implemented through all SPLIT sites during the second phase.

This research should lead to actionable information about integrating QoL measures into post-transplant care in particular, and pediatric ambulatory care more generally. The ultimate goal is to see full implementation in most pediatric transplant centers in North America, while creating information that will inform implementation that can be adopted by any pediatric center. The research will provide insight into how new health IT strategies can improve the utilization of PROs and improve outcomes and quality of care and thus be potentially widely applicable in many chronic conditions.