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).
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.
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).
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.