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: 10457344
• 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/10457344
• 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.

这项合作是由两个网络提出的，旨在将患者的优先事项纳入 儿科移植护理：Starzl 儿科移植卓越网络 – SNEPT 和儿科肝移植协会 – SPLIT 我们的网络将使之成为可能。 以“逐步”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测量 (PROM)，该测量 生活质量（小儿肝移植生活质量问卷，PeLTQL），评估 可行性，并确定第一阶段所需的改进 SPLIT 将主办 40 个中心。 第二实施阶段。 为了将 PeLTQL 集成到实践中，我们将使用创新的健康 IT 平台 （RealTime Clinic©；RTC），由移植接受者的父亲开发，旨在改善家庭状况 该平台是一个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 RTC 向临床团队报告之前完成 PeLTQL。 父母和孩子的个人分数，以及“差异分数”（差异分数） 临床医生将根据需要根据信息采取行动。 在实施的第一阶段，我们将定制RTC以供SNEPT中心使用，收集 关于可用性和对患者结果的影响的信息（药物依从性和质量） 生活），然后我们将根据调查结果和反馈适当修改工具。 通过所有 SPLIT 站点进行更广泛的实施，我们的最终目标是至少 80%。 SPLIT 中的实施，如果实现，将意味着移植中的广泛实施 中心遍布北美及其他地区。 这项研究预计将带来有关生活质量整合的可操作信息 特别是针对移植后护理以及更广泛的儿科门诊护理的措施。