Cowie Julie, Boa Sally, King Emma, Wells Mary, Cairns David
Nursing, Midwifery and Allied Health Professions Research Unit, Glasgow Caledonian University, Glasgow, United Kingdom.
Strathcarron Hospice, Denny, United Kingdom.
JMIR Form Res. 2018 Aug 17;2(2):e15. doi: 10.2196/formative.9703.
Many patients undergoing treatment for head and neck cancer (HNC) experience significant swallowing difficulties, and there is some evidence that swallowing exercises may improve outcomes, including quality of life. This feasibility study developed an evidence-based, practical Swallowing Intervention Package (SiP) for patients undergoing chemoradiotherapy (CRT) for HNC. As part of the study, an electronic version of SiP (e-SiP) was concurrently developed to support patients to self-manage during treatment. This paper reports on the e-SiP component of this work.
The objective of our study was to develop and conduct a preliminary evaluation of an electronic support system (e-SiP) for patients undergoing CRT for HNC.
The study was conducted using a recognized mHealth development and evaluation framework and involved health professionals and patients who were undergoing CRT for HNC. The scoping stage of e-SiP development investigated the potential usefulness of the app, exploring how e-SiP would look and feel and what content would be appropriate to provide. Patient and carer focus groups and a health professionals' consensus day were used as means of data gathering around potential e-SiP content. A repeat focus group looked at an outline version of e-SiP and informed the next stage of its development with regard to refining the requirements for the tool. This was followed by further development and a testing stage of e-SiP that involved the coding of a prototype, which was then evaluated using a series of steering group meetings, semistructured interviews with both patients and health care professionals, and analysis of e-SiP log data.
Feedback from focus groups and health professional interviews was very positive, and it was felt e-SiP use would support and encourage patients in conducting their swallowing exercises. However, of the 10 patients who were offered e-SiP, only 2 opted to use it. For these patients, the aspects of the e-SiP app were considered useful, in particular, the ease of keeping a diary of exercises performed. Interviews with users and nonusers suggested significant barriers to its use. Most significantly, the lack of flexibility of the platform on which e-SiP could be accessed appeared a dominant factor in deterring e-SiP use.
The results suggest that further research needs to be conducted around the implementation of e-SiP. This involves evaluating how e-SiP can be better integrated into usual care and through patient training and staff engagement, can be perceived as a beneficial tool to help support patients in conducting swallowing exercises.
许多接受头颈癌（HNC）治疗的患者存在明显的吞咽困难，有证据表明吞咽练习可能改善包括生活质量在内的治疗结果。这项可行性研究为接受HNC放化疗（CRT）的患者制定了一个基于证据的实用吞咽干预方案（SiP）。作为研究的一部分，同时开发了SiP的电子版（e-SiP），以支持患者在治疗期间进行自我管理。本文报告了这项工作的e-SiP部分。
我们研究的目的是为接受HNC CRT的患者开发并进行电子支持系统（e-SiP）的初步评估。
本研究采用公认的移动健康发展和评估框架，纳入了接受HNC CRT的医护人员和患者。e-SiP开发的范围界定阶段调查了该应用程序的潜在实用性，探讨了e-SiP的外观和使用感受以及适合提供的内容。患者和护理人员焦点小组以及医护人员共识日被用作围绕潜在e-SiP内容收集数据的方式。一个重复的焦点小组查看了e-SiP的大纲版本，并就完善该工具的要求为其下一阶段的开发提供了信息。随后是e-SiP的进一步开发和测试阶段，其中涉及对一个原型进行编码，然后通过一系列指导小组会议、对患者和医护人员的半结构化访谈以及对e-SiP日志数据的分析对其进行评估。
焦点小组和医护人员访谈的反馈非常积极，认为使用e-SiP将支持和鼓励患者进行吞咽练习。然而，在提供e-SiP的10名患者中，只有2人选择使用。对于这些患者，e-SiP应用程序的各个方面被认为是有用的，特别是记录所进行练习的便利性。对使用者和非使用者的访谈表明了其使用存在重大障碍。最显著的是，可访问e-SiP的平台缺乏灵活性似乎是阻碍e-SiP使用的一个主要因素。
结果表明需要围绕e-SiP的实施开展进一步研究。这涉及评估如何将e-SiP更好地整合到常规护理中，以及通过患者培训和工作人员参与，使其被视为有助于支持患者进行吞咽练习的有益工具。
