Patient Perspective on Using Digital Resources to Address Unmet Needs in Systemic Lupus Erythematosus

Abstract

Objective 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. Methods 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. Results 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. Conclusion 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.

Interest on the internet for systemic lupus erythematosus: Analysis of Google Trends in Latin American countries

“…This suggests the importance of developing customized information according to the patients' needs to understand new symptoms or changes on their lab results. 12 These could explain the lack of differences between topics in our study. The category "famous" contained terms about Selena Gomez.…”

Development of a digital toolkit to improve quality of life of patients with systemic lupus erythematosus

“…Despite this limitation, our previous work suggests that the vast majority of the clinic population at the recruitment site do use the internet for lupus-related searches. 34 While our overall sample size ( n = 15) was small, it was appropriate given the scope of our test (e.g. e-toolkit was not a final version).…”

“…Priorities of stakeholders suggested a need to focus on nutrition and patient–provider communication (content) and use of digital technologies, specifically a web-based platform (intervention methods), which was aligned with our previous work in this area. 23 , 34 , 35 …”

“… 32 , 33 We conducted a study with 56 Washington University Lupus Clinic patients and found that 98.2% of participants had internet access and 80% currently used the internet for SLE information. 34 This finding suggests that these patients did not experience many of the traditional barriers in internet access as a population level understanding of the digital divide would suggest. In addition, qualitative data from this study indicated desire for enhanced digital tools such as personalized, dynamic information that is vetted by medical experts and the ability to exchange personal experiences and SLE knowledge with others.…”

“…In addition, qualitative data from this study indicated desire for enhanced digital tools such as personalized, dynamic information that is vetted by medical experts and the ability to exchange personal experiences and SLE knowledge with others. 34 …”