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

SNEPT 和 SPLIT 在儿科移植受者中实施 QoL 测量

• 批准号: 10247314
• 负责人: George V Mazariegos
• 金额: $ 39.66万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-01 至 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10247314
• 关键词: SNEPT; SPLIT; implementation; QoL; measure

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.

这一合作努力是由两个网络提出的，这两个网络寻求将患者的优先事项整合到 小儿移植护理：Starzl小儿移植卓越网络- SNEPT和儿科肝移植协会- SPLIT。我们的网络将使 实施，评估和改进的“逐步”的方式：SNEPT，一个合作， 7个主要中心将实施患者报告的结局指标（PROM）， 生活质量（儿科肝移植生活质量问卷，PeLTQL），评价 可行性，并确定第一阶段需要改进的地方。SPLIT拥有40个中心， 第二个实施阶段。 为了将PeLTQL集成到实践中，我们将使用创新的医疗IT平台 （RealTime Clinic©; RTC），由移植受者的父亲开发，以改善家庭 参与护理。该平台是一个智能手机应用程序和基于Web的界面。 父母和孩子将在访视前完成PeLTQL。RTC将向临床团队报告 父母和孩子的个人得分，以及“差异得分”（差异 父母和孩子之间的关系）。临床医生将根据需要对信息采取行动。 在实施的第一阶段，我们将为SNEPT中心定制RTC，收集 关于可用性和对患者结局影响的信息（药物依从性和质量 并根据调查结果和反馈酌情修改工具。然后我们将 在所有SPLIT网站上更广泛地实施。我们的最终目标是至少80% 这一点如果能够实现，将意味着广泛执行移植 遍布北美和其他地区 这项研究预计将导致可操作的信息整合的生活质量 特别是移植后护理，以及更普遍的儿科门诊护理。