患者报告的结果对患有晚期癌症的儿童和父母的好处:一种定性研究
Alexandra Merz1, Deborah Feifer1, Madeline Avery2
1Department of Psychosocial Oncology and Palliative Care (A.M., D.F., E.T., I.E., OA, J.W., M.L.R.), Dana-Farber Cancer Institute, Boston, MA, USA.
在儿科瘤学中,电子患者报告结果 (e-PRO) 增强了癌症儿童及其家长的沟通和意识. 这些工具改善了生活质量跟踪和患者与医疗服务提供者的联系.
科学领域:
- 儿科瘤学 儿科瘤学
- 数字健康数字健康
- 患者报告的结果
背景情况:
- 电子患者报告结果 (e-PROs) 显示出在儿科瘤学中跟踪症状和生活质量 (QoL) 的潜力.
- 电子PRO的临床实施是有限的,缺乏关于儿童和家长观点的研究.
研究的目的:
- 探索儿童和家长对使用e-PROs用于例行症状和QOL报告的好处的观点.
- 了解e-PRO如何影响儿童癌症患者及其家属的体验.
主要方法:
- 从PediQUEST响应试验中对采访成绩单进行定性分析.
- 对105名儿童参与者及其家长关于他们每周e-PRO调查的经验的数据进行主题分析.
主要成果:
- 电子PRO的两个主要好处出现了:增加了自我意识和反思,以及加强了沟通.
- e-PROs促进了儿童和家长之间的讨论,以及学习二元和护理团队之间的讨论.
结论:
- 儿童癌症患者和家长从常规的e-PRO完成中获得了显著的好处.
- 研究结果表明,e-PRO可以整合到常规儿科瘤护理中,以改善患者的体验和沟通.
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