Abstract
OBJECTIVE: To evaluate pain, fatigue, and psychological functioning of childhood-onset systemic lupus erythematosus (SLE) patients and examine how these factors impact health-related quality of life (HRQOL). METHODS: At a tertiary rheumatology clinic, 60 childhood-onset SLE patients completed the following: a visual analog scale (VAS) of pain intensity (0-10), the Pediatric Quality of Life (PedsQL) multidimensional fatigue scale, Pain Coping Questionnaire, Pain Catastrophizing Scale (PCS), Children's Depression Inventory I (CDI-I), the Screen for Child Anxiety Related Emotional Disorders (SCARED) questionnaire, and the PedsQL generic core (GC) scale and rheumatology module (RM). Sociodemographics and multiple disease activity indicators were recorded. RESULTS: Fatigue was present in 65% of the patients. Clinically relevant pain (pain-VAS >3), anxiety (SCARED ≥25), and depressive symptoms (CDI-I >12) were observed in 40%, 37%, and 30% of the patients, respectively; 22% had high catastrophizing (PCS ≥26). On average, the PedsQL-GC and -RM scores for childhood-onset SLE were lower than in healthy norms. Reduced PedsQL-GC and -RM scores were highly correlated with greater levels of fatigue, anxiety, and depressive symptoms (Pearson's r > 0.65), but had weak correlation with disease activity (Pearson's r < 0.25). Regression analysis demonstrated HRQOL was most impacted by fatigue, pain, and anxiety when evaluating all factors concurrently (P < 0.001). CONCLUSION: Childhood-onset SLE is associated with decreased HRQOL, and psychological aspects of health contribute substantially to low HRQOL, whereas measures of childhood-onset SLE activity seem less relevant. Fatigue, pain, mood, and anxiety symptoms are present in a large subgroup of patients and need medical attention to achieve optimal health outcomes.