使用IT改善患有癌症的儿童的治疗结果 (SyMon-SAYS):单个机构等待列表随机对照试验的协议
Jin-Shei Lai1,2, Sally E Jensen1, John Devin Peipert1,2
1Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States.
JMIR research protocols
|September 8, 2023
概括
本研究测试了年轻幸存者的症状监测和系统评估和报告系统 (SyMon-SAYS),用于患有癌症的儿童. 该系统旨在通过基于电子健康记录的常规监测来改善症状管理,自我有效性和生活质量.
科学领域:
- 儿科瘤学 儿科瘤学
- 数字健康干预措施 数字健康干预措施
- 症状管理 症状管理
背景情况:
- 患有癌症的儿童和青少年面临着许多疾病和与治疗相关的症状,影响生活质量.
- 常规症状监测对于儿科瘤学中的支持性护理至关重要.
- 年轻幸存者的症状监测和系统评估和报告系统 (SyMon-SAYS) 是通过电子健康记录 (EHR) 中患者报告的结果进行每周症状评估的数字系统.
研究的目的:
- 检查SyMon-SAYS系统对儿童癌症患者症状管理,自我有效性和症状严重性的感知障碍的影响.
- 改善自我管理,临床干预,治疗的坚持以及患者,家长和提供者之间的互动.
- 通过加强症状监测和管理来优化临床结果.
主要方法:
- 一个等候名单随机对照试验,涉及200名患有癌症的儿童 (8-17岁) 和他们的护理人员.
- 赛蒙-SAYS系统集成到EHR (Epic) 中,用于临床医生警告和患者门户报告 (Epic MyChart).
- 参与者被随机分配,接受16周的干预或8周的通常护理,然后进行8周的干预,在8周和16周进行分析.
主要成果:
- 在8周的假设结果包括降低父母感知的障碍,提高父母和孩子的自我效能,降低孩子的症状负担.
- 该研究预计,与等候名单对照相比,与儿童健康相关的生活质量有所改善.
- 可行性,可接受性和参与度将使用混合方法进行评估.
结论:
- 预计SyMon-SAYS系统将有助于在儿童癌症患者中迅速识别有问题的症状.
- 图形症状报告和及时的提供者响应可能使儿童和父母能够积极管理症状.
- 假设这种主动方法可以进一步改善临床结果.
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