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 (DHIs) have the potential to improve patients' social support but have yet to be studied extensively in SLE. Our objective was to assess general and SLE-specific internet usage as well as specific suggestions for SLE-related digital resources and tools among patients with SLE at the Washington University Lupus Clinic.
Fifty-six participants were recruited from the Washington University Lupus Clinic. Ten-minute structured interviews consisting of multiple choice and open-ended questions were conducted. A descriptive statistical analysis was conducted with the quantitative data, while the qualitative data were analyzed using an open coding approach.
Nearly all respondents indicated having access to the internet (98.2%). Eighty percent currently use the internet for their SLE. The qualitative data indicate that patients with SLE use the internet for understanding flares and changes in their symptoms and/or laboratory results, want an increased variety of SLE information online, have a desire to exchange personal experiences and knowledge of SLE with others, and desire increased diversity in the methods of delivering digital SLE information.
Our findings support the continued use of DHIs for patients with SLE. We believe that these findings will aid the future development of DHIs tailored to patients with SLE.