Background/Purpose: The clinical variability of systemic lupus erythematosus (SLE) caused by the unpredictability of flares contributes to patients experiencing a diminished sense of social support. Digital health interventions (DHI) – interventions accessible through digital technologies (i.e. apps, internet) on devices such as mobile phones, tablets, and computers – have the potential to improve this eroded social support. Digital resources have shown to improve disease self-management and health-related quality of life in other chronic diseases like rheumatoid arthritis and chronic pain. However, DHIs for SLE have yet to be studied extensively. Our objective was to assess: 1) general and SLE-specific internet usage and 2) specific suggestions for SLE-related digital resources and tools among SLE patients at the Washington University Lupus Clinic.

Methods: Fifty-six patients with American College of Rheumatology or Systemic Lupus International Collaborating Clinics classified SLE were recruited from the Washington University Lupus Clinic. Because SLE affects mostly women, only female patients were considered. No other specific characteristics were sought.

Ten-minute structured interviews were conducted. Multiple choice questions assessed internet access, types of devices used to access the internet, how patients currently use the internet for their SLE, what topics they would be interested to see in the future, and demographics. Open-ended questions assessed what other SLE-related information or support they would like to use the internet for and what would make them more likely to use it for their SLE needs. Descriptive statistical analysis was conducted with the quantitative data, while the qualitative data was analyzed using an open coding approach, where similar or recurring responses were categorized into themes and subthemes.

Results: Nearly all respondents indicated having access to the internet (98.2%, n=55). Currently, 80.0% (n=44) use the internet to locate SLE-related information, all of whom were interested in continuing or increasing this use. Participants indicated that they were interested in most topics presented (i.e. connecting with other SLE patients, nutrition and SLE, new/alternative treatments). The qualitative data indicated that SLE patients: 1) used the internet for understanding flares, changes in their symptoms, and/or lab results; 2) wanted a greater variety of SLE information; 3) wanted to exchange personal experiences and knowledge of SLE with others; and 4) desired increased diversity in the methods of delivering digital SLE information.

Conclusion: Our findings indicate that patients were not only already using the internet for their SLE, but also eager to provide suggestions to improve current digital resources. A primary suggestion from patients was a desire for dynamic, interactive resources that would enable patients to access content according to the symptomatology they are experiencing. Other considerations include developing interventions that are customizable to the patient and provide SLE information that is consistent with that received from their healthcare providers. We believe that our findings will aid future development of DHIs for SLE patients.

« Back to ACR Convergence 2020

ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-patient-perspective-on-using-digital-resources-to-address-unmet-needs-in-systemic-lupus-erythematosus/