SurvivorLink: Scalability of an Electronic Personal Health Record for Cancer Survivors and Caregivers at Pediatric Cancer Centers.

摘要 需要对照顾者和儿科癌症幸存者进行干预，以改善以患者为中心的护理， 减少后遗症，提升整体幸福感。这项研究的目的是评估 Survivor关于实施和遵守癌症护理和后遗症检查/筛查的链接系统。 这项研究项目建议开发一个标准化的过程来实现SurvivorLink，一个 个人电子健康记录和教育系统，旨在促进儿科领域的幸存者护理 癌症诊所。我们将使用混合1有效性-实施、集群随机、等待名单控制 设计以评估其跨地点和在儿童青少年癌症幸存者和他们之间的有效性 照顾者。对SurvivorLink的使用和可扩展性的审查将有助于采用证据-- 儿科癌症中心远期效应监测指南的实施 国家级。本研究的具体目的是：1)制定标准化的干预措施 为SurvivorLink试验提供培训；Aim 2a)通过混合1有效性评估SurvivorLink的影响- 儿科癌症门诊患者生存期护理的整群随机等待名单对照试验 就诊次数和基于风险的监测、照顾者的患者激活、幸存者和照顾者的质量 管理慢性病的生活和自我效能感；2b)进行过程评估，了解 Survivor链接衡量使用、参与、可接受性、感知的有用性和满意度 儿童幸存者和他们的照顾者；3)评估SurvivorLink的采用情况并将其纳入临床 工作流程、情景促进者和实施障碍，使用综合框架 实施研究框架，并在实施后一年和两年衡量早期可持续性 通过混合方法研究；以及目标4)评估Survivorlink的采用和覆盖范围等 儿科癌症诊所从其在1年内在儿童肿瘤小组网络网站上传播开始 它的发展。这项研究是第一项全面的、有效的实施研究，以评估 电子个人健康记录(包括护理计划)和教育系统对儿童癌症的影响 幸存者和他们的照顾者。我们的研究将对有关技术干预的文献做出贡献 为儿科癌症幸存者提供支持和长期护理。它还将确定最佳的 组织内外环境促进者(情境)在儿童癌症中的实施 诊所。

Summary Interventions for caregivers and pediatric cancer survivors are needed to improve patient-centered care, minimize late effects and promote overall well-being. The purpose of this research is to assess the impact of the SurvivorLink system on implementation and adherence to cancer care and late effects visits/screening. This research projects proposes to develop a standardized process by which to implement SurvivorLink, a personal electronic health record and education system, designed to promote survivor care, within pediatric cancer clinics. We will utilize a hybrid 1 effectiveness-implementation, clustered randomized, waitlist control design to evaluate its effectiveness across sites and among pediatric adolescent cancer survivors and their caregivers. The examination of the use and scalability of SurvivorLink would facilitate the adoption of evidence- based guidelines implementation for the surveillance of late effects among pediatric cancer centers at the national level. The specific aims for this research are to: Aim 1) develop a standardized intervention and training for the SurvivorLink trial; Aim 2a) evaluate the impact of SurvivorLink through a hybrid 1 effectiveness- implementation, clustered randomized waitlist control trial of pediatric cancer clinics on patient survivor care visit attendance and risk-based surveillance, caregiver’s patient activation, survivor’s and caregiver’s quality of life and self-efficacy to manage a chronic condition; 2b) conduct a process evaluation of the uptake of SurvivorLink to measure use, participation, acceptability, perceived usefulness and satisfaction among childhood survivors and their caregivers; 3) assess the adoption and integration of SurvivorLink into the clinical workflow, contextual facilitators and barriers to implementation, using the Consolidated Framework for Implementation Research framework, and measure early sustainability at 1 and 2 years post implementation through a mixed methods study; and Aim 4) assess the adoption and reach of Survivorlink among other pediatric cancer clinics from its dissemination on the Children’s Oncology Group Network website within 1 year of its development. This study is the first comprehensive, effectiveness-implementation study to evaluate the impact of an electronic personal health record (with care plan) and education system for pediatric cancer survivors and their caregivers. Our research will contribute to the literature about technological interventions to impact supportive and long-term care for pediatric cancer survivors. It will also identify the optimal organizational inner and outer setting facilitators (context) for its implementation among pediatric cancer clinics.