Background/Purpose:

The Lupus Foundation of America is in Year 3 of a 5-year cooperative agreement with the Centers for Disease Control and Prevention to develop an online self-management program for individuals newly diagnosed with lupus. This presentation will summarize 1) formative research to identity the key self-management behaviors that will be the focus of the program, and 2) initial steps in the application of the Transtheoretical Model of Change (TTM) to those key behaviors. Meeting the needs of individuals with lupus requires an intervention designed to promote behavior change for those who are not ready, getting ready, and ready to manage their condition. The TTM provides an evidence-based framework for matching interventions to stage of change–Precontemplation, Contemplation, Preparation, Action and Maintenance.

Methods:

Two literature reviews and a landscape analysis were completed with the goal of identifying and classifying: 1) the top needs of individuals with lupus (particularly those of minorities); and 2) key self-management strategies that best meet those needs. Next, based on findings from the literature review and landscape analysis, draft operational definitions of those key behaviors were developed. In a series of interviews, the definitions were reviewed and refined by four cultural experts—three of whom had expertise on lupus–and three lupus subject matter experts. Upcoming activities will include nine interviews with individuals with lupus. The first step in applying the TTM to those behaviors is to develop and validate measures of stage of change for each behavior. Stage measures begin with an operational definition of the target behavior, and then ask questions about current behavior and intentions, using simple decision rules to assign individuals to stages. This summer, an online survey will be administered to 150 individuals with lupus to validate the stage of change measures. Analyses will examine the degree to which stage of change for each behavior is related, as predicted, to measures of lupus self-management and well-being.

Results:

Four key self-management behaviors have been identified: 1) communicating with one’s health care team; 2) managing medications; 3) managing symptoms of lupus; and 4) managing stress and distress related to lupus. Operational definitions for each are being finalized. The online survey described above will examine the degree to which stage of change measures for each behavior relate to well-being and other indicators of effective lupus self-management.

Conclusion: Meeting the needs of individuals with lupus requires an intervention matched to readiness to engage in key behaviors for lupus self-management. This is particularly important given the waxing and waning of lupus symptoms, and the heterogeneity of the disease in terms of severity and manifestations. The relationships between stage of change and the program’s behavior change constructs provide an evidence-based framework for developing and delivering tailored feedback that may be more likely to be considered relevant, credible and memorable and to lead behavior change among people with lupus.

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