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一个面向炎症性肠病患者的基于网络的波斯语患者教育系统和自助小组。

A web-based patient education system and self-help group in Persian language for inflammatory bowel disease patients.

作者信息

Rezailashkajani Mohammadreza, Roshandel Delnaz, Ansari Shahin, Zali Mohammad Reza

机构信息

Research Center for Gastroenterology and Liver Diseases, Shaheed Beheshti Medical University, Tehran, Iran.

出版信息

Int J Med Inform. 2008 Feb;77(2):122-8. doi: 10.1016/j.ijmedinf.2006.12.001. Epub 2007 Jan 8.

Abstract

BACKGROUND AND AIMS

To study the use patterns of a Persian web-based patient education system for inflammatory bowel disease (IBD) patients in Iran.

METHODS

A web-based patient education system was developed with Persian content in three sections: general, ulcerative colitis (UC), and Crohn's disease (CD). The website included a forum for patients to communicate as a self-help group. A customized web tracking system recorded web use statistics. Polls at the bottom of each page collected the visitors' opinion on the extent of helpfulness and readability of page contents. Web use data were analyzed for an 18-month period from October 2004 to April 2006.

RESULTS

Having excluded page visits from search engine robots, the website's homepage was visited 4452 times (mean of monthly visits: 234, range: 102-330). The web pages titled Anatomy of gastrointestinal system, Nutrition in IBD, Diagnostic tests, How to cope with IBD, and IBD in women were the most favorite in general section. The web page titled IBD treatment was the most visited in both CD and UC sections followed by the web pages on cause of disease, diagnostic procedures and complications in CD section; and those titled symptoms, cause of disease and risk factors in the UC section. Overall, the content evaluation polls received 294 hits (from 186 unique visitors) of which, 196 (67%) were from patients, 30 (10%) from patients' relatives/friends, 21 (7%) from doctors, and 47 (16%) from other groups. During the 18-month period, 47 patients registered in the self-help forum, 24 threads were opened, and 97 posts (33 in CD and 64 in UC section) were sent.

CONCLUSIONS

Considering the increasing trend of Internet use in developing countries like Iran, and the consequent increase in the proportion of Internet-using patients, and finally the time constraints gastroenterologists face answering patients' questions; similar websites seem to be effective ways of patient education in close future.

摘要

背景与目的

研究伊朗基于网络的针对炎症性肠病(IBD)患者的波斯语患者教育系统的使用模式。

方法

开发了一个基于网络的患者教育系统,内容为波斯语,分为三个部分:一般内容、溃疡性结肠炎(UC)和克罗恩病(CD)。该网站设有一个论坛,供患者作为自助团体进行交流。一个定制的网络跟踪系统记录网络使用统计数据。每页底部的民意调查收集访客对页面内容的有用性和可读性程度的意见。对2004年10月至2006年4月这18个月期间的网络使用数据进行了分析。

结果

排除搜索引擎机器人的页面访问后,该网站主页被访问4452次(月平均访问量:234次,范围:102 - 330次)。一般内容部分中,标题为“胃肠系统解剖”“IBD中的营养”“诊断测试”“如何应对IBD”以及“女性IBD”的网页最受欢迎。在CD和UC部分,标题为“IBD治疗”的网页访问量最高,其次是CD部分关于疾病病因、诊断程序和并发症的网页;以及UC部分标题为“症状”“疾病病因”和“危险因素”的网页。总体而言,内容评估民意调查收到294次点击(来自186位独立访客),其中196次(67%)来自患者,30次(10%)来自患者的亲属/朋友,21次(7%)来自医生,47次(16%)来自其他群体。在这18个月期间,47名患者在自助论坛注册,开启了24个主题,发送了97个帖子(CD部分33个,UC部分64个)。

结论

考虑到像伊朗这样的发展中国家互联网使用呈增长趋势,以及随之而来的使用互联网的患者比例增加,最后还有胃肠病学家在回答患者问题时面临的时间限制;类似的网站在不久的将来似乎是有效的患者教育方式。

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