PATIENT E-LEARNING TOOLS FOR ADULTS WITH CYSTIC FIBROSIS

Background: Patient education is an integral part of management and care. For adults with Cystic Fibrosis, new procedures and devices may arise. Studies have shown that patients forget between 40%-80% provided during a consultation, hence other accessible platforms for disseminating this knowledge is required. Aim: This paper aims to outline the design, creation and evaluation of three patient e-learning tools. These tools are available online so that they can be accessed by patients via bedside tablets in a hospital ward and personal devices. This research will then investigate usage data from those users accessing the tools in a hospital and non-hospital context. Methodologies: Three education tools were developed which focus on Portacaths, Gastrostomy Tubes, and Bronchoscopies. All educational multimedia was developed and validated by the Cork CF Multidisciplinary team. The information is presented to the user in a FAQ (Frequently Asked Questions) format, where users can navigate through content via buttons with a series of commonly asked questions. These questions are identified by CF nurse specialists with over 25 years’ experience in educating CF adults on these devices and procedures. The web tools are developed using HTML, CSS, AJAX, PHP and JavaScript. Once the user visits an e-learning tool, a unique identifier is generated and stored in the browser's local storage as well as a text file on the server. Each button click and respective time stamp is then stored in the text file. This data is then analysed to determine the most frequently viewed content as well as time spent viewing content and visiting the e-learning tool. Results: Overall, all three e-learning tools were accessed more frequently by personal devices. Generally, users tended to spend less time using the e-learning tools via the bedside tablet. There was also a tendency for users to visit more general information on the bedside tablets, whereas users who access the e-learning tools from personal devices tended to spend more time exploring the web tools and focused more on care information. Conclusion: Patient education is an integral part of care. From the pilot study conducted by this research, it would appear that patients exhibit different motivations when visiting e-learning material in a hospital and non-hospital setting. As such it is advised that e-learning content is made available to patients in each context.

研究背景：患者教育是诊疗与照护工作不可或缺的组成部分。对于囊性纤维化（Cystic Fibrosis）成年患者而言，新的诊疗操作与医疗设备层出不穷。研究表明，患者在诊疗咨询过程中获取的信息有40%~80%会被遗忘，因此亟需其他可及性平台来开展此类知识的传播。
研究目标：本文旨在阐述三款患者电子学习工具的设计、开发与评估流程。上述工具均支持在线访问，患者可通过病房床头平板或个人设备进行使用。本研究将对在医院环境与非医院环境下使用该工具的用户行为数据展开分析。
研究方法：本研究开发了三款分别针对皮下植入式输液港（Portacath）、胃造瘘管（Gastrostomy Tube）以及支气管镜检查（Bronchoscopy）的患者教育工具。所有教育多媒体内容均由科克囊性纤维化多学科团队开发并验证。内容以常见问题解答（Frequently Asked Questions, FAQ）形式呈现，用户可通过带有一系列常见问题的按钮浏览相关内容。这些问题均由拥有25年以上囊性纤维化成年患者教育经验的专科护士精心筛选。本网页工具采用HTML、CSS、AJAX、PHP及JavaScript语言开发。当用户访问某款电子学习工具时，系统将生成唯一标识符，并将其存储于浏览器本地存储及服务器端的文本文件中。用户的每一次按钮点击操作及对应的时间戳均会被写入该文本文件。后续将对这些数据进行分析，以明确用户最常浏览的内容、浏览内容所花费的时间，以及访问电子学习工具的整体时长。
研究结果：整体而言，三款电子学习工具均以个人设备的访问频次更高。通常情况下，用户通过床头平板使用电子学习工具的时长更短。此外，使用床头平板的用户更倾向于浏览一般性信息，而通过个人设备访问工具的用户则会花费更多时间探索网页工具，且更专注于照护相关内容。
研究结论：患者教育是照护工作的核心组成部分。本研究的预试验结果显示，患者在医院环境与非医院环境下访问电子学习材料时，其使用动机存在差异。因此，建议在两种场景下均为患者提供电子学习内容。