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数字健康工具嵌入癌症遗传学诊所:观察性研究
Sujay Nagaraj1,2, Ron Rabinowicz2,3, Sarah Goodday4,5
1Department of Computer Science, University of Toronto, Toronto, ON, Canada.
JMIR formative research
|February 2, 2026
概括
数字健康工具 (DHT) 显示出对监测Li-Fraumeni综合征 (LFS) 患者的前景,捕获重要的心理和生理数据. 研究结果表明,DHT可以帮助在高风险家庭中早期发现和干预危险.
科学领域:
- 数字健康数字健康
- 遗传学 是一个遗传学.
- 在瘤学瘤学.
背景情况:
- 数字健康工具 (DHTs) 提供了个性化护理的潜力,但它们的参与和实用性,特别是在儿科患者群体中,尚未得到充分理解.
- 李-弗劳梅尼综合征 (LFS) 需要终身癌症监测,并由于TP53瘤抑制基因突变导致严重的心理压力.
研究的目的:
- 在LFS癌症遗传学诊所中评估用户对DHT的参与.
- 探索DHT对LFS患者和临床医生的临床实用性.
- 收集关于将DHT纳入慢性疾病管理和研究的见解.
主要方法:
- 一项观察性研究 (2022年1月至12月) 包括45名患有LFS的参与者 (9名儿童,36名成年人).
- 参与者使用了Empatica EmbracePlus智能手表,并完成了心理社会福祉调查.
- 使用生存分析,使用一般化添加模型的生理模式和采访的用户体验来分析参与.
主要成果:
- 成年人比儿童更高的智能手表佩戴时间 (81%对56%) 和研究保留时间 (153对77天).
- 儿童报告说,抑郁症状,睡眠障碍和压力水平显著增加.
- 生理学数据揭示了与癌症监测相关的压力模式,自杀警报系统触发了5名参与者的干预.
结论:
- 在患有LFS的高风险儿科和家庭群体中,DHT可用于捕获有意义的心理和生理数据.
- DHTs有助于及时发现紧急情况和针对性干预,改善患者护理.
- 这些发现支持以患者为中心的DHT集成在儿科瘤学和其他数字健康应用中.
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