Background/Purpose: The Lupus Foundation of America is in Year 4 of a 6-year cooperative agreement with the Centers for Disease Control and Prevention to develop an online lupus self-management program based on the Transtheoretical Model of Change (the “stage model”). The program, Strategies to Embrace Living with Lupus Fearlessly (SELF), is a web-based intervention designed to help users adopt 4 key lupus self-management behaviors: 1) managing symptoms, 2) managing stress, 3) managing medications, and 4) working with a health care team. These behaviors were identified and operationally defined in year 3 of the cooperative agreement. We summarize the program design, as well as feedback from early users and engagement experts.

Methods: The intervention consists of 4 complementary components: 1) user assessments, 2) a web portal with stage-matched activities and information, 3) outbound text messages and emails to facilitate change and user engagement, and 4) a reporting tool to measure program utilization and outcomes.

The intake process consists of 4 modules, each focused on one of the 4 key behaviors. The modules provide feedback tailored to user responses to questions. After intake, users select a behavior to focus on, and a customized web portal becomes available. The portal includes stage-matched activities, a symptom tracker, a journal, information on the 4 key lupus self-management behaviors, and links to the Foundation’s National Resource Center on Lupus, Health Educators, and LupusConnect™ messaging boards for peer support. Participants can sign up for emails or texts with stage-matched tips and links to the portal activities.

Every two weeks, the program delivers a mini assessment to track changes in self-efficacy, and asks users to select the behavior they would like to focus on next. Every 90 days, the program administers a comprehensive assessment and a printable report summarizing data on lupus symptoms, self-management behaviors, and stage of change that can be shared with a provider.

5 individuals with lupus with diverse demographic characteristics recruited by the Lupus Foundation of America served as early program testers. Engagement experts also reviewed the program design and structure.  

Results: Feedback from early users and engagement experts was largely positive and used to refine the online program. Program development will be finalized by the Fall of 2019, at which time pilot testing will begin.

Conclusion: The SELF program is designed to provide a cohesive, tailored experience to help individuals with lupus manage their condition. This is the first program of its kind to deliver information and activities tailored to stage of change for four key behaviors for lupus self-management.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/design-and-development-of-an-online-intervention-for-lupus-self-management-based-on-the-transtheoretical-model-of-change/