SNEPT and SPLIT implementation of a QoL measure in pediatric transplant recipients

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This collaborative effort is proposed by two networks that seek to integrate patient priorities into pediatric transplant care: the Starzl Network for Excellence in Pediatric Transplantation – SNEPT and the Society of Pediatric Liver Transplantation – SPLIT. Our networks will enable implementation, evaluation, and improvement in a “stepwise” fashion: SNEPT, a collaboration of 7 leading centers, will implement a patient-reported outcome measure (PROM) which measures quality of life (Pediatric Liver Transplant Quality of Life questionnaire, PeLTQL), evaluate feasibility, and identify needed improvements in the first phase. SPLIT, with 40 centers, will host the second implementation phase. To enable PeLTQL integration into practice, we will use an innovative health-IT platform (RealTime Clinic©; RTC), developed by the father of a transplant recipient to improve family engagement in care. The platform is a smartphone application and a web-based interface. Parent and child will complete the PeLTQL before the visit. RTC will report to the clinical team an individual score for parent and child, as well as a “discrepancy score” (the difference between parent and child scores). Clinicians will act on the information as needed. In the first phase of implementation, we will customize RTC for use in SNEPT centers, collect information on usability and impact on patient outcomes (adherence to medications and quality of life), and modify the tool as appropriate based on the findings and feedback. We will then move into a broader implementation through all SPLIT sites. Our final goal is at least 80% implementation in SPLIT, which, if achieved, would mean broad implementation in transplant centers across North America and beyond. This study is expected to lead to actionable information about integration of quality of life measures into post-transplant care in particular, and pediatric ambulatory care more generally.