SLE can be relentless. An inflammatory autoimmune disease that affects multiple systems within the body. It challenges patients across ethnicities, leaving them grappling with symptoms that disrupt their lives. While SLE predominantly affects black women, it also impacts Asian and Caucasian women. Unfortunately, there’s no magic cure. Instead, treatment focuses on symptom management. But what about the quality of life (QoL) of these patients? How does SLE affect their daily experiences, work, and overall well-being?

Objectives

Our mission was clear: to delve into the lived experiences of SLE patients from diverse ethnic backgrounds. We wanted to understand the true breadth of impact of this complex disease beyond clinical symptoms alone.

Methods

We embarked on a cross-sectional observation study, reaching out to SLE patients in both UK and South Africa. Over three months, patients shared their stories through an online survey. We explored the availability of treatments, the strain on family life, and their ability to work. To measure QoL, we used the LupusPro tool, while work productivity was assessed using the Work Productivity Activity Impairment (WPAI) survey.

Results

Our study cohort included 121 patients (21 from UK and 100 from South Africa):

  • Of these, 39% Caucasian, 46% Black, and 21% from other ethnicities.
  • Average time from symptom onset to diagnosis was 1.6 years, with a mean of 7.8 yours since SLE diagnosis.
  • Fatigue emerged as the most bothersome symptom, closely followed by muscle and joint pain.
  • Medications, side effects, and family planning challenges negatively impacted patient QoL.
  • Family activities and intimate relationships were also disrupted by the disease.
  • At work, absenteeism cost an average of 6.4 hours per week per patient.

Conclusion

SLE knows no boundaries in its impact on patients’ lives. It affects physical and mental health, family dynamics, and productivity across diverse ethnicities. Alleviating fatigue could be a game-changer for these patients’ QoL.

At Prime we are passionate in what we do and feel proud of our expertise and engagement in debate. Passion fuels our research into patient care and that will help lead to better outcomes!

For the poster showcasing the research please visit EULAR 2024 abstract archive, poster no. POS0158-PARE or contact Lesley.piltz@primeglobalpeople.com