%0期刊文章%@ 1438- 8871% I JMIR出版物%V 19卡塔尔世界杯8强波胆分析% N 8% P e288% T“我正常吗?”A Oerlemans,Simone %A Arts,Lindy P %A Horevoorts,Nicole J %A van de polll - franse,Lonneke V %+研究部门,荷兰综合癌症组织,Godebaldkwartier 419, PO Box 19079, 3501 DB,乌得勒支,3501 DB,荷兰,31 (0)88 234 6195,s.oerlemans@iknl.nl %K淋巴瘤%K健康相关生活质量%K个性化反馈%K自我护理%K信息获取%K基于人群的研究%D 2017 %7 15.08.2017 %9原始论文%J J医学互联网Res %G英语%X背景:向患者提供关于患者报告的结果(PROs)的反馈可以帮助患者监测他们的功能和症状,并可能有助于增强他们的能力。目的:本研究的目的是调查淋巴瘤患者是否希望获得PRO反馈,包括与同龄人比较评分的选项,以及如何评估这种反馈。方法:我们邀请了64名参与淋巴瘤队列的患者,他们有资格进行随访问卷调查,并让他们选择接受PRO反馈。患者完成与健康相关的生活质量(HRQoL)和症状问题。专家反馈是通过柱状图提供的。结果:64名受邀患者中,45人参与(应答率70%),其中36人(80%)希望获得PRO反馈。绝大多数患者(34/ 36,94%)将他们的评分与淋巴瘤参考队列进行比较,64%的患者(23/36)将他们的评分与没有癌症的规范人群进行比较。所有患者都希望获得有关其HRQoL的反馈,29例(81%)至33例(92%)希望获得关于其功能、疲劳、神经病、焦虑和抑郁症状的反馈。 Of the 36 participants wishing to receive PRO feedback, 35 (97%) viewed it as being useful, with reassurance and knowledge about their own functioning in relation to what is “normal” being the most frequently mentioned reasons. Conclusions: A high number of patients with lymphoma wished to receive PRO feedback. Patients reported the comparison of their scores versus a lymphoma reference cohort as most valuable. Further research should investigate whether PRO feedback could increase empowerment and possibly improve HRQoL. %M 28811271 %R 10.2196/jmir.7079 %U //www.mybigtv.com/2017/8/e288/ %U https://doi.org/10.2196/jmir.7079 %U http://www.ncbi.nlm.nih.gov/pubmed/28811271
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