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

这一合作努力是由两个网络提出的，它们寻求将患者的优先事项整合到 儿科移植护理：斯塔兹尔卓越儿科移植网络-- SNEPT和儿科肝移植学会--Split。我们的网络将使 以“循序渐进”的方式实施、评估和改进：SNEPT 7个领先中心，将实施患者报告结果衡量(PROM)，以衡量 生活质量(儿科肝移植患者生活质量问卷，PeLTQL)，评估 可行性，并确定第一阶段需要改进的地方。斯普利特，有40个中心，将主办 第二个实施阶段。 为了将PeLTQL集成到实践中，我们将使用一个创新的健康IT平台 (实时诊所；RTC)，由移植受者的父亲开发，以改善家庭 全身心投入到护理中。该平台是一款智能手机应用程序和一个基于网络的界面。 家长和孩子将在探访前完成PeLTQL。RTC将向临床团队报告 父母和孩子的个人分数，以及“差异分数”(差异 父母和孩子之间的分数)。临床医生将根据需要采取行动。 在实施的第一阶段，我们将定制用于SNEPT中心的RTC，收集 关于可用性和对患者结果的影响的信息(坚持用药和质量 生命)，并根据调查结果和反馈适当修改该工具。到时候我们会的 通过所有拆分站点实现更广泛的实施。我们的最终目标是至少80% 在Split中实施，如果实现，将意味着在移植中广泛实施 中心遍布北美和更远的地方。 这项研究有望为生活质量的整合提供可操作的信息 特别是移植后护理的措施，以及更广泛的儿科门诊护理。

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.