JMIR Publications

ABSTRACT

Background:

Lupus erythematosus (LE) is an autoimmune condition with known detriment to quality of life. TikTok™, a popular video-posting app, provides a unique opportunity to understand patient experiences with LE within a non-clinical sample.

Objective:

To evaluate disease-related experiences of TikTok users with LE using qualitative and content analysis.

Methods:

TikTok videos were included if they contained “#lupus”, were downloadable, were in English, and involved the personal experience of an individual with LE. A codebook was developed using a standardized, inductive approach of iterative coding until saturation was reached. NVivo, a qualitative analysis software platform, was employed to code videos and perform content analysis. Inductive thematic analysis was used to derive themes from the data.

Results:

153 TikTok videos met inclusion criteria. The most common codes were “experiences with symptoms” (106, 69.3%), “mucocutaneous symptoms” (61, 39.9%), and “experiences with treatment” (59, 38.6%). “Experiences with symptoms” and “mucocutaneous symptoms” had the greatest cumulative views (24,426,874 and 14,082,409 views, respectively). Five thematic conclusions were derived from the data: 1) Mucocutaneous symptoms had profound effects on the mental health and body image of TikTok users with LE; 2) TikTok users’ negative experiences with health care workers were often derived from diagnostic delays and perceptions of “medical gaslighting”; 3) TikTok users tended to portray non-pharmacologic interventions, such as diet and naturopathic remedies, positively, whereas pharmacologic treatments were portrayed negatively or referred to as “chemotherapy”; 4) LE symptoms, particularly musculoskeletal symptoms and fatigue, interfered with users’ daily functioning; and 5) Although TikTok users frequently had strong support systems, feelings of isolation were often attributed to battling an “invisible illness”.

Conclusions:

This study demonstrates that social media can provide important, clinically-relevant information for health practitioners caring for patients with chronic conditions such as LE. Since mucocutaneous symptoms were predominant drivers of distress in our sample, treatment of hair loss and rash is vital in this population. However, pharmacologic therapies were often depicted negatively, reinforcing the significance of discussions on the safety and effectiveness of these treatments. Additionally, while TikTok users demonstrated robust support systems, feelings of having an “invisible illness” and “medical gaslighting” dominated negative interactions with others. This underscores the importance of providing validation in clinical interactions.