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Evaluation of different features of an eHealth application for personalized illness management support: cancer patients' use and appraisal of usefulness.评估电子健康应用程序在个性化疾病管理支持方面的不同特征:癌症患者的使用情况及其对有用性的评价。
Int J Med Inform. 2013 Jul;82(7):593-603. doi: 10.1016/j.ijmedinf.2013.02.007. Epub 2013 Mar 16.
2
How user characteristics affect use patterns in web-based illness management support for patients with breast and prostate cancer.用户特征如何影响针对乳腺癌和前列腺癌患者的基于网络的疾病管理支持中的使用模式。
J Med Internet Res. 2013 Mar 1;15(3):e34. doi: 10.2196/jmir.2285.
3
Palliative care research: lessons learned by our team over the last 25 years.姑息治疗研究:我们团队在过去 25 年中获得的经验教训。
Palliat Med. 2013 Dec;27(10):939-51. doi: 10.1177/0269216313477177. Epub 2013 Feb 26.
4
Capturing treatment decision making among patients with solid tumors and their caregivers.记录实体瘤患者及其护理人员的治疗决策过程。
Oncol Nurs Forum. 2013 Jan;40(1):E24-31. doi: 10.1188/13.ONF.E24-E31.
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Unraveling Uses and Effects of an Interactive Health Communication System.解析交互式健康通信系统的用途与效果
J Broadcast Electron Media. 2009;53(1):112-133. doi: 10.1080/08838150802643787. Epub 2009 Mar 12.
6
Use of email and telephone prompts to increase self-monitoring in a Web-based intervention: randomized controlled trial.使用电子邮件和电话提示来增加基于网络干预中的自我监测:随机对照试验。
J Med Internet Res. 2012 Jul 27;14(4):e96. doi: 10.2196/jmir.1981.
7
One step at a time: self-management and transitions among women with ovarian cancer.一步一个脚印:卵巢癌女性的自我管理与过渡
Oncol Nurs Forum. 2012 Jul;39(4):354-60. doi: 10.1188/12.ONF.354-360.
8
American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care.美国临床肿瘤学会临时临床意见:姑息治疗融入标准肿瘤治疗。
J Clin Oncol. 2012 Mar 10;30(8):880-7. doi: 10.1200/JCO.2011.38.5161. Epub 2012 Feb 6.
9
Involvement in decision-making about treatment and ovarian cancer survivor quality of life.参与治疗决策与卵巢癌幸存者生活质量
Gynecol Oncol. 2012 Mar;124(3):465-70. doi: 10.1016/j.ygyno.2011.10.029. Epub 2011 Oct 29.
10
A survey of gynecologic oncologists regarding the end-of-life discussion: a pilot study.妇科肿瘤学家临终讨论调查:一项初步研究。
Gynecol Oncol. 2012 Mar;124(3):471-3. doi: 10.1016/j.ygyno.2011.09.029. Epub 2011 Oct 20.

开发和试点卵巢癌女性预先护理计划网站:一项随机对照试验。

Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.

机构信息

Masonic Cancer Center, University of Minnesota, Minneapolis, MN, USA.

出版信息

Gynecol Oncol. 2013 Nov;131(2):430-6. doi: 10.1016/j.ygyno.2013.08.017. Epub 2013 Aug 27.

DOI:10.1016/j.ygyno.2013.08.017
PMID:23988413
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4593652/
Abstract

OBJECTIVE

Few available tools facilitate cancer patients and physicians' discussions of quality of life and end-of-life. Our objective was to develop a web-based tool to promote advance care planning for women with ovarian cancer.

METHODS

Women with ovarian cancer, their families, clinicians and researchers met to identify ways to improve cancer care. A prototype website was created to address advance care planning, focusing on advance healthcare directives (AHD) and palliative care consultation. Patients were recruited from a gynecologic oncology clinic for a pilot randomized controlled trial. Primary outcomes included completion of an AHD and palliative care consultation.

RESULTS

At study completion, 53 women with ovarian cancer were enrolled and 35 completed the study. The mean age at enrollment was 57.9 ± 9.5 years; most were newly diagnosed or at first recurrence. There were no statistical differences in completion of AHD (p=0.220) or palliative care consultation (p=0.440) between intervention and control groups. However, women in the intervention group showed evidence of moving toward decision making regarding AHD and palliative care and lower decisional conflict. Women assigned to the intervention, compared to control website, were highly satisfied with the amount (p=0.054) and quality (p=0.119) of information and when they accessed the website, used it longer (p=0.049). Overall website use was lower than expected, resulting from several patient-related and design barriers.

CONCLUSIONS

A website providing information and decisional support for women with ovarian cancer is feasible. Increasing frequency of website use requires future research.

摘要

目的

目前可用的工具很少能促进癌症患者和医生讨论生活质量和临终问题。我们的目标是开发一种基于网络的工具,以促进卵巢癌患者的预先护理计划。

方法

卵巢癌患者、其家属、临床医生和研究人员开会确定了改善癌症护理的方法。创建了一个原型网站来解决预先护理计划问题,重点是预先医疗指令(AHD)和姑息治疗咨询。从妇科肿瘤学诊所招募患者参加一项先导随机对照试验。主要结局包括完成 AHD 和姑息治疗咨询。

结果

在研究完成时,招募了 53 名卵巢癌患者,其中 35 名完成了研究。入组时的平均年龄为 57.9 ± 9.5 岁;大多数为新诊断或首次复发。干预组和对照组在完成 AHD(p=0.220)或姑息治疗咨询(p=0.440)方面无统计学差异。然而,干预组的女性在 AHD 和姑息治疗方面表现出决策的迹象,并且决策冲突较低。与对照组网站相比,分配到干预组的女性对信息量(p=0.054)和质量(p=0.119)以及访问网站的时间(p=0.049)非常满意。由于患者相关和设计方面的障碍,网站的整体使用频率低于预期。

结论

为卵巢癌患者提供信息和决策支持的网站是可行的。增加网站的使用频率需要进一步的研究。