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

总结 需要对护理人员和儿童癌症幸存者进行干预，以改善以患者为中心的护理， 最大限度地减少后期影响，促进整体福祉。本研究的目的是评估 关于实施和坚持癌症护理和晚期效应访视/筛查的SurvivorLink系统。 该研究项目提出了一个标准化的过程，通过该过程来实现SurvivorLink， 个人电子健康记录和教育系统，旨在促进幸存者护理，在儿科 癌症诊所我们将利用混合1有效性-实现，群集随机化，等待列表控制 设计以评估其在各研究中心和儿童青少年癌症幸存者及其 照顾者对SurvivorLink的使用和可扩展性的审查将有助于采用证据- 基于指南的儿科癌症中心晚期效应监测的实施 国家层面本研究的具体目标是：目标1）制定标准化干预措施， SurvivorLink试验的培训;目标2a）通过混合1有效性评估SurvivorLink的影响- 儿童癌症诊所对患者幸存者护理的整群随机等候名单对照试验的实施 访视出勤率和基于风险的监测，照顾者的病人激活，幸存者和照顾者的质量 生活和自我效能感，以管理慢性病; 2b）进行吸收的过程评估， SurvivorLink用于衡量使用、参与、可接受性、感知有用性和满意度， 儿童幸存者及其照顾者; 3）评估SurvivorLink在临床中的采用和整合 工作流程、背景促进因素和实施障碍，使用 实施研究框架，并在实施后1年和2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， 儿童肿瘤学小组网络网站上传播的儿科癌症诊所1年内 它的发展。这项研究是第一个全面的，有效的实施研究，以评估 电子个人健康记录（含护理计划）和教育系统对儿童癌症影响 幸存者及其照顾者。我们的研究将有助于有关技术干预的文献， 对儿童癌症幸存者的支持性和长期护理。它还将确定最佳的 组织内部和外部设置促进者（上下文），用于在儿科癌症中实施 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.