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.

两个网络提出了这项协作努力 小儿移植护理：Starzl儿科移植卓越网络 - Snept和小儿肝移植社会 - 分裂。我们的网络将启用 以“逐步”方式实施，评估和改进：Snept，合作 7个领先中心将实施一项患者报告的结果指标（PROM），以衡量测量 生活质量（小儿肝移植质量的生活质量问卷调查，Peltql），评估 可行性并确定第一阶段所需的改进。分裂，有40个中心，将主持 第二个实施阶段。 为了实践PELTQL集成，我们将使用创新的健康平台 （实时诊所©; rtc），由移植接收者的父亲开发以改善家庭 参与护理。该平台是智能手机应用程序和基于Web的接口。 父母和孩子将在访问前完成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 在父母和子女分数之间）。临床医生将根据需要采取行动。 在实施的第一阶段，我们将自定义RTC用于Snept中心，收集 有关可用性和对患者结果的影响的信息（遵守药物和质量 生命），并根据发现和反馈来适当修改工具。然后我们会 通过所有拆分站点进入更广泛的实现。我们的最终目标是至少80％ 在分裂中实施，如果实现，这将意味着在移植中进行广泛的实施 北美及其他地区的中心。 预计这项研究将导致有关生活质量整合的可行信息 尤其是在移植后护理中措施，更广泛地进行小儿门诊护理。