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

SurvivorLink：儿科癌症中心癌症幸存者和护理人员电子个人健康记录的可扩展性。

• 批准号: 9901481
• 负责人: NGOC-CAM ESCOFFERY
• 金额: $ 62.52万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-04-01 至 2023-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9901481
• 关键词: 21 year old; Adherence; Adolescent; Adolescent and Young Adult; Adoption; Affect; Awareness; Cancer Center; Cancer Survivor; Cancer Survivorship; Caregivers; Caring; Child; Child Care; Childhood; Chronic; Chronic Disease; Clinic; Clinical; Communication Tools; Complex; Development; Diagnosis; Disease Management; Education; Effectiveness; Electronic Health Record; Evaluation; Guidelines; Health; Health education; Healthcare; Hybrids; Individual; Information Technology; Institute of Medicine (U.S.); Intervention; Late Effects; Literature; Long-Term Care; Longevity; Longterm Follow-up; Malignant Childhood Neoplasm; Malignant Neoplasms; Measures; Methods; Online Systems; Patient Education; Patient-Centered Care; Patients; Pediatric Oncology Group; Penetration; Personal Health Records; Personal Satisfaction; Population; Process; Quality of Care; Quality of life; Randomized; Recommendation; Reporting; Research; Research Project Grants; Risk; Self Efficacy; Site; Standardization; Survivors; System; Systems Integration; Technology; Testing; Thinking; Time; Training; Visit; Waiting Lists; base; cancer care; cancer diagnosis; cancer therapy; care delivery; caregiver interventions; childhood cancer survivor; control trial; design; effectiveness implementation study; evidence base; evidence based guidelines; follow-up; group intervention; health record; implementation research; improved; innovation; member; patient population; prevent; programs; public health priorities; satisfaction; screening; survivorship; uptake; web site; web-based tool

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.

概括 需要对护理人员和儿科癌症存活的干预措施来改善以患者为中心的护理， 最大程度地减少迟到的效果并促进整体福祉。这项研究的目的是评估 SurvivorLink系统在实施和遵守癌症护理和延迟效果访问/筛查方面。 这项研究计划了开发标准化过程的建议 个人电子健康记录和教育系统，旨在促进儿科促进幸存者护理 癌症诊所。我们将利用混合1的有效性实践，群集随机，候补列表控制 设计以评估其各地以及小儿青少年癌症生存的有效性及其 照顾者。对生存链接的使用和可伸缩性的检查将有助于采用证据 - 基于指南实施了在儿科癌症中心对后期作用监测的实施 国家一级。这项研究的具体目的是：目标1）制定标准化干预措施和 SurvivorLink试验培训； AIM 2A）评估通过混合1有效性的survivorLink的影响 - 实施，小儿癌诊所的随机候补候补候补控制试验对患者生存护理 访问出勤率和基于风险的监视，护理人员的患者激活，幸存者和看护人的质量 生活和自我效能感以管理慢性状况； 2b）对吸收的过程评估 survivorLink以衡量使用，参与，可接受性，可感知的有用性和满意度 童年幸存者及其照料者； 3）评估SurvivorLink的采用和整合到临床中 工作流程，上下文促进者和实施障碍，使用合并框架 实施研究框架，并在实施后1和2年衡量早期的可持续性 通过混合方法研究；目标4）评估生存链接的采用和覆盖 小儿癌症诊所在1年内在儿童肿瘤学小组网站上传播。 它的发展。这项研究是评估该研究的第一项全面，有效性的研究 电子个人健康记录（护理计划）和儿科癌症的教育系统的影响 幸存者及其照顾者。我们的研究将为有关技术干预的文献做出贡献 对小儿癌症存活的影响和长期护理。它还将确定最佳 组织内部和外部环境促进者（上下文）在小儿癌中实施 诊所。