Background/Purpose: Individuals living with systemic lupus erythematosus (SLE) face a number of challenges in managing their condition. Initial interviews and community forums with SLE patients suggested that unpredictability and variability of symptoms contribute to the erosion of formal and informal social support and highlighted the need for information and skills to adapt to symptom fluctuations. Patients suggested that digital tools may be particularly well suited to addressing these unmet needs because symptom unpredictability reduces the ability to reliably attend in-person interventions. The purpose of this project was to use patient-centered outcomes research (PCOR) and community-based participatory research (CBPR) principles of practice to engage stakeholders including SLE patients, patient advocacy organizations, and providers to prioritize unmet needs and to develop resources to address those needs.

Methods: Initial recommendations for content priorities and methods of delivery were developed through a series of stakeholder meetings (patients, health care providers, representatives from community-based organizations) and a mixed-methods survey of SLE patients evaluating internet usage and access. A clickable prototype of the digital toolkit was then developed incorporating priority content areas. Alpha (individuals with no affiliation with SLE clinic) and beta (patients and family members, health care providers, clinical staff) usability assessments of the clickable prototype were conducted through semi-structured interviews.

Results: Content areas identified as priorities included: nutrition, improving communication (family/friends and health care providers), physical activity, and self-management. Respondents provided a number of suggestions based on their review of our toolkit and experiences with existing SLE resources. Respondents emphasized the benefits of digital access to this content (website, smartphone application). Given the variability of SLE experiences, respondents desired the ability to regularly visit the platform, to receive tailored messages which would guide them to relevant information, and to conduct open searches of the material. Key suggestions for improving the platform included a sign-in for users to track activity, a live chat with SLE experts, a variety of static and dynamic virtual tools, and an ability to connect with other SLE patients.

Conclusion: Individuals living with SLE have dynamic needs that change over time. Digital platforms were identified by stakeholders as a viable way to respond to these dynamic needs since they can be easily accessed and tailored to individuals. Community-based/patient-centered approaches ensure that the perspectives of those who are affected most by a problem are included in intervention design.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/development-of-a-digital-toolkit-to-improve-quality-of-life-of-patients-with-systemic-lupus-erythematosus-a-pilot-study/