Anand Anju, Tullis Elizabeth, Stephenson Anne, Abhyankar Preyanka
St. Michael's Hospital, Division of Respirology, University of Toronto, Canada.
St. Michael's Hospital, Division of Respirology, University of Toronto, Canada.
J Cyst Fibros. 2014 May;13(3):306-10. doi: 10.1016/j.jcf.2013.10.013. Epub 2013 Dec 4.
The high prevalence of internet use among adults with cystic fibrosis (CF) provides an opportunity for healthcare professionals to use the internet as a tool for patient education. The Toronto Adult Cystic Fibrosis website was developed, implemented, and evaluated (www.torontoadultcf.com).
The website structure and content were developed following a needs assessment questionnaire. The website was evaluated with a satisfaction survey and through examination of compliance to American Medical Association (AMA)'s guidelines for health information sites.
Users showed a high prevalence of internet usage (98.7%), described a need for more information about CF and provided content suggestions. A satisfaction survey revealed that CF patients compose the highest proportion of site users (57.5%), and users perceive the site as useful, with a mean score of 4.3 on a five-point satisfaction scale. Key areas for improvement have been identified. Website compliance with AMA guidelines was excellent at 80%.
The Toronto Adult CF website provides needed information for our patients. Future directions include ongoing improvement of the website as a patient resource and assessment of the ability of the website to improve patient knowledge and outcomes.
成年囊性纤维化（CF）患者中互联网使用率很高，这为医疗保健专业人员利用互联网作为患者教育工具提供了机会。多伦多成人囊性纤维化网站（www.torontoadultcf.com）已开发、实施并进行了评估。
根据需求评估问卷开发了网站结构和内容。通过满意度调查以及检查是否符合美国医学协会（AMA）健康信息网站指南对该网站进行了评估。
用户显示出较高的互联网使用率（98.7%），表示需要更多关于CF的信息并提供了内容建议。一项满意度调查显示，CF患者占网站用户的比例最高（57.5%），用户认为该网站有用，在五点满意度量表上的平均得分为4.3分。已确定了关键的改进领域。该网站符合AMA指南的程度极佳，达到了80%。
多伦多成人CF网站为我们的患者提供了所需信息。未来的方向包括持续改进该网站作为患者资源的功能，以及评估该网站提高患者知识水平和改善治疗效果的能力。
