The Starzl Network for Excellence in Pediatric Transplantation (SNEPT) and the Society of Pediatric Liver Transplantation (SPLIT) have teamed up to introduce innovative health IT strategies to enhance the quality of life of pediatric transplant patients. The collaboration aims to increase the utilization of patient reported outcomes (PROs) in pediatric transplant care, which can lead to improved patient-centered health outcomes and quality of care.
First Phase
Six well-known SNEPT centers will use the Pediatric Liver Transplant Quality of Life (PeLTQL) questionnaire to see if there is room for improvement.
Second Phase
Third Phase
SNEPT and SPLIT have identified barriers to the adoption of PROs, including the need to streamline scoring and the desire for families to complete the questionnaires in advance of the visit. To overcome these barriers, the networks propose to use an innovative health IT platform called RealTime Clinic (RTC). The platform is a smartphone application and a web-based interface that can be integrated with Electronic Health Records (EHR) platforms and will allow both the parent and child to complete the PRO before the visit.
The platform will provide a two-way communication channel between the transplant team and the family, enhancing engagement and communication. The most important innovations in the approach are the presentation of PRO information, which includes a discrepancy score that highlights differences between parent and child perceptions of quality of life, and the novel platform (RTC).
The specific aims of the project are to customize the RTC to meet the needs of the participating centers, implement the PeLTQL scores, and evaluate the usability and impact of the platform. The success of the project will be measured by the percentage of patient-parent dyads who have recorded PeLTQL scores and the ease of use of the platform, among other metrics.
According to the spokesperson for SNEPT and SPLIT, "The collaboration between the two networks is a significant step towards improving patient-centered health outcomes and quality of care for pediatric transplant patients. The innovative approach of using a health-IT platform to present PRO information and enhance engagement has the potential to generate generalizable information about the use of PROs in any pediatric specialty or primary care setting."
The SNEPT and SPLIT network's efforts to implement PROs in pediatric transplant care will undoubtedly revolutionize pediatric transplant care and enhance the quality of life for these young patients.
