Background/Purpose: Patient-reported outcome measures (PROs) in SLE can capture patient specific information and the patient perspective, but clinical use can be challenging due to confounding conditions like fibromyalgia (FM). We employed three PROs to evaluate clinical features and patient assessment of disease activity in SLE patients with and without FM.

Methods: This was a cross sectional study of SLE patients (ACR 1997 or SLICC 2012 criteria) in a university lupus clinic from January to May 2018.  All patients completed these PROs: Systemic Lupus Activity Questionnaire (SLAQ), Patient Health Questionnaire-9 (PHQ9), and 2011 ACR FM criteria.  Active SLE was defined as SLEDAI ≥6, clinical SLEDAI ≥4, or active lupus nephritis.  We identified 4 groups based on SLE activity and FM criteria: active SLE without FM, active SLE with FM, inactive SLE with FM, and inactive SLE without FM.  Clinical variables assessed included self-reported lupus symptoms, flare, disease activity level, hospital/ER admission, medication adherence, SLEDAI, and PGA. Relationships between variables in different groups were analyzed by Fisher’s exact test and ANOVA.  A step-wise linear regression analysis analyzed predictors of treatment for FM.

Results: 212 patients completed PROs  (92% female, mean age 45 years). In our cohort, 31% had active SLE without FM, 13% active SLE with FM, 8% inactive SLE with FM, and 48% inactive SLE without FM. Regardless of SLE disease activity, patients with FM (21% of respondents), reported more muscle weakness, muscle pain, fatigue, sicca, oral/nasal ulcers, dyspnea, chest pain, forgetfulness, headache, numbness, abdominal pain, cognitive dysfunction and waking unrefreshed. There was no difference in reported ER/hospitalization rates (24%) or self-reported medication compliance (86.4%) between the 4 groups in the preceding 3 months. Active and inactive SLE patients with FM self-reported higher disease activity, rates of lupus flare, and had higher SLAQ scores, compared to inactive or active SLE without FM.  

FM symptoms were addressed (education or intervention) at 38% of visits. In regression models, FM counseling increased with increasing PHQ9 score (OR: 1.21; 95% CI: 1.11, 1.33) and for patients who self-reported a lupus flare (OR: 3.05; 95% CI: 1.16, 8.03). In contrast, FM counseling decreased with increasing PGA score (OR: 0.17; 95% CI: 0.07, 0.44).

Without FM, there was moderate correlation between patient and physician disease activity measures in active SLE, but there was discordance between patient and physician assessments as measured by the SLEDAI, PGA, SLAQ and patient reported lupus activity in SLE patients with FM.

Conclusion: FM is common in SLE patients and is associated with a unique set of self-reported symptoms.  FM in SLE results in discordance between patient reported lupus activity and physician assessment as patients with FM report higher levels of disease activity.