Diet and lupus: what do the patients think?

Area of Science:

• Rheumatology
• Nutrition Science
• Public Health

Background:

• Cardiovascular disease (CVD) is a primary cause of mortality in systemic lupus erythematosus (SLE) patients.
• Dietary interventions targeting lipid levels offer a potential strategy for managing CVD risk in SLE.
• Understanding patient perspectives on diet as therapy is crucial for developing effective interventions.

Purpose of the Study:

• To explore SLE patients' experiences and opinions regarding diet as a therapeutic option.
• To assess patient willingness to modify diet and participate in diet-based clinical trials.
• To gather this information efficiently using a cost- and time-effective approach.

Main Methods:

• A lay summary and a 15-question online diet survey were disseminated for three weeks.
• Social media platforms were utilized to promote the survey through patient advocacy groups, hospitals, and research institutions.
• An anonymous online platform facilitated data collection.

Main Results:

• The study received 300 responses, with 284 from diagnosed SLE patients.
• A significant gap in clinical dietary counseling was reported, with only 24% of patients having discussed diet with their doctor.
• All patients expressed willingness to alter their diet for symptom improvement, and 83% would join future diet intervention trials.
• Patient-submitted research suggestions indicated strong interest in dietary strategies for managing fatigue and disease flares.

Conclusions:

• This study successfully collected valuable patient insights on diet and SLE within a short period using social media.
• Findings demonstrate strong patient support for further research and clinical trials investigating dietary interventions for SLE symptom management.
• The results underscore the potential of diet as a complementary therapeutic approach for SLE patients, particularly for fatigue and flares.