Nguyen Amy D, Frensham Lauren J, Wong Michael Xc, Meslin Sylvain Mm, Martin Paige, Lau Annie Ys, Baysari Melissa T, Day Richard O
St Vincent's Clinical School, University of New South Wales Sydney, Sydney, Australia.
Department of Clinical Pharmacology & Toxicology, St Vincent's Hospital Sydney, Darlinghurst, Australia.
JMIR Mhealth Uhealth. 2018 Oct 15;6(10):e182. doi: 10.2196/mhealth.9811.
Gout is a form of chronic arthritis caused by elevated serum uric acid (SUA) and culminates in painful gout attacks. Although effective uric acid-lowering therapies exist, adherence is low. This is partly due to the lack of support for patients to self-manage their disease. Mobile health apps have been used in the self-management of chronic conditions. However, not all are developed with patients, limiting their effectiveness.
The objective of our study was to collect feedback from gout patients to design an effective gout self-management app.
Two descriptive qualitative studies were conducted. In Study 1, researchers developed a short educational video and written materials about gout management, designed to be embedded into an app; 6 interviews and 1 focus group were held with gout patients to gather feedback on these materials. Usability testing in Study 2 involved additional gout patients using a pilot version of Healthy.me Gout, a gout self-management app, for 2 weeks. Following the trial, patients participated in an interview about their experiences using the app.
Patients viewed the gout educational material positively, appreciating the combined use of video, text, and images. Patients were receptive to using a mobile app to self-manage their gout. Feedback about Healthy.me Gout was generally positive with patients reporting that the tracking and diary features were most useful. Patients also provided suggestions for improving the app and educational materials.
These studies involved patients in the development of a gout self-management app. Patients provided insight to improve the app's presentation and usability and general lessons on useful features for chronic disease apps. Gout patients enjoyed tracking their SUA concentrations and gout attack triggers. These capabilities can be translated into self-management apps for chronic diseases that require monitoring of pathological values, medication adherence, or symptoms. Future health app design should integrate patient input and be developed iteratively to address concerns identified by patients.
痛风是一种由血清尿酸（SUA）升高引起的慢性关节炎，最终会导致疼痛的痛风发作。尽管存在有效的降尿酸疗法，但依从性较低。这部分是由于缺乏对患者自我管理疾病的支持。移动健康应用程序已被用于慢性病的自我管理。然而，并非所有应用程序都是与患者共同开发的，这限制了它们的有效性。
我们研究的目的是收集痛风患者的反馈，以设计一款有效的痛风自我管理应用程序。
进行了两项描述性定性研究。在研究1中，研究人员制作了一段关于痛风管理的简短教育视频和书面材料，旨在嵌入应用程序中；对痛风患者进行了6次访谈和1次焦点小组讨论，以收集他们对这些材料的反馈。研究2中的可用性测试让更多痛风患者使用痛风自我管理应用程序Healthy.me Gout的试用版，为期2周。试验结束后，患者参加了一次关于使用该应用程序体验的访谈。
患者对痛风教育材料给予了积极评价，赞赏视频、文本和图像的结合使用。患者愿意使用移动应用程序来自我管理痛风。对Healthy.me Gout的反馈总体上是积极的，患者报告称跟踪和日记功能最有用。患者还提供了改进应用程序和教育材料的建议。
这些研究让患者参与了痛风自我管理应用程序的开发。患者提供了见解，以改进应用程序的展示和可用性，并为慢性病应用程序的有用功能提供了一般性经验教训。痛风患者喜欢跟踪他们的SUA浓度和痛风发作诱因。这些功能可以转化为用于需要监测病理值、药物依从性或症状的慢性病的自我管理应用程序。未来的健康应用程序设计应整合患者的意见，并进行迭代开发，以解决患者提出的问题。
