The clinical variability of systemic lupus erythematosus (SLE) caused by flares’ unpredictability contributes to patients experiencing a diminished sense of social support. Digital health interventions (DHI) have the potential to improve patients’ social support but have yet to be studied extensively in SLE. 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.
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 was 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 SLE patients:
- Use the internet to understand flares and changes in their symptoms and lab results.
- Want an increased variety of SLE information online.
- Have a desire to exchange personal experiences and knowledge of SLE with others.
- Desire increased diversity in the methods of delivering digital SLE information.
Our findings support the continued use of DHIs for SLE patients. We believe that these findings will aid the future development of DHIs tailored to SLE patients.