Deck Anna, Singh Kiran, Caras Paula, LeClair Amy, Gore-Massy Monique, Chiu Faye, Dantas Lucas Ogura, McAlindon Timothy, Folta Sara, Kasturi Shanthini
School of Medicine, Tufts University, Boston, MA, United States.
Division of Rheumatology, Department of Medicine, Tufts Medical Center, 800 Washington Street, Boston, MA, 02111, United States, 1 617-636-5990.
JMIR Form Res. 2025 Aug 26;9:e75399. doi: 10.2196/75399.
Fatigue is a highly prevalent and debilitating symptom of systemic lupus erythematosus (SLE), significantly affecting the quality of life and employment of those living with the disease. Nonpharmacologic approaches, such as physical activity interventions, have shown promise in reducing fatigue but are often resource-intensive and lack grounding in behavior change theory. Mobile health (mHealth) technology offers a scalable approach to delivering behavioral interventions.
This study describes the development of an mHealth app, grounded in behavior change theory, to support fatigue self-management in individuals with SLE by promoting physical activity.
We used a human-centered design (HCD) approach to develop an mHealth app grounded in the self-determination theory of motivation and the social cognitive theory of behavior change. The process included two phases: (1) inspiration and (2) ideation. In the inspiration phase, key user needs were identified from focus groups of adults with SLE. During the ideation phase, a prototype was developed and iteratively refined based on feedback from additional individuals with SLE who participated in multiple rounds of semistructured interviews and online feedback surveys.
In the inspiration phase, 12 individuals participated in 2 focus groups and identified key priorities for the mHealth intervention, including symptom tracking (fatigue, pain, sleep, and physical activity), reliable educational content, social connection, and reminders. In the ideation phase, a prototype was developed based on these findings and refined through 2 rounds of user feedback interviews with 12 additional adults with SLE. Participants rated the features and format of the prototype favorably, with average scores ranging from 1.4 to 2.1 on a 5-point Likert scale (1=highest rating), and 78% (7/9) of interviewees reported they were likely or highly likely to use the app. Several themes around preferences for the app emerged from the interviews, including the importance of: (1) community and social connection, (2) accessibility and inclusion, (3) options for customization, (4) integration of the app with existing digital health tools, and (4) notifications for reminders and motivational messages. Based on this feedback, the prototype was refined, and a digital messaging feature was created. A library of 154 reminders and motivational messages was developed with input from 10 individuals with SLE who took part in a third round of interviews.
Using an HCD approach, we developed an mHealth app tailored to the needs of individuals with SLE, integrating behavior change theory to support fatigue self-management. Through engagement with end users, we iteratively refined the app to address key priorities and enhance usability. This study demonstrates the feasibility of using HCD to develop an mHealth app grounded in behavior change theory and provides a model for creating rigorous digital health interventions for individuals with SLE and other chronic conditions.
疲劳是系统性红斑狼疮（SLE）极为常见且使人虚弱的症状，严重影响患者的生活质量和就业。非药物治疗方法，如体育活动干预，在减轻疲劳方面显示出前景，但往往资源密集且缺乏行为改变理论的支撑。移动健康（mHealth）技术提供了一种可扩展的方式来实施行为干预。
本研究描述了一款基于行为改变理论开发的mHealth应用程序的开发过程，旨在通过促进体育活动来支持SLE患者进行疲劳自我管理。
我们采用以用户为中心的设计（HCD）方法，基于动机的自我决定理论和行为改变的社会认知理论开发了一款mHealth应用程序。该过程包括两个阶段：（1）灵感阶段和（2）构思阶段。在灵感阶段，从成年SLE患者焦点小组中确定关键用户需求。在构思阶段，开发了一个原型，并根据参与多轮半结构化访谈和在线反馈调查的其他SLE患者的反馈进行迭代优化。
在灵感阶段，12名个体参与了2个焦点小组，确定了mHealth干预的关键优先事项，包括症状跟踪（疲劳、疼痛、睡眠和体育活动）、可靠的教育内容、社交联系和提醒。在构思阶段，基于这些发现开发了一个原型，并通过对另外12名成年SLE患者进行两轮用户反馈访谈进行优化。参与者对原型的功能和形式评价良好，在5点李克特量表（1 = 最高评分）上的平均得分在1.4至2.1之间，78%（7/9）的受访者表示他们可能或非常可能使用该应用程序。访谈中出现了几个关于应用程序偏好的主题，包括以下方面的重要性：（1）社区和社交联系，（2）可及性和包容性，（3）定制选项，（4）应用程序与现有数字健康工具的集成，以及（4）提醒和激励信息的通知。基于此反馈，对原型进行了优化，并创建了一个数字消息功能。在10名参与第三轮访谈的SLE患者的参与下，开发了一个包含154条提醒和激励信息的库。
通过采用HCD方法，我们开发了一款针对SLE患者需求定制的mHealth应用程序，整合行为改变理论以支持疲劳自我管理。通过与最终用户的互动，我们对应用程序进行了迭代优化，以解决关键优先事项并提高可用性。本研究证明了使用HCD开发基于行为改变理论的mHealth应用程序的可行性，并为为SLE患者和其他慢性病患者创建严格的数字健康干预措施提供了一个模型。
