Illness perception and psychological distress in adolescents with systemic lupus erythematosus

Background The illness perception and mental health in Systemic Lupus Erythematosus (SLE) is acknowledged. However, the link between illness perceptions and psychological issues in adolescents with SLE remains unclear. This study aims to assess the relationships between illness perception and depressive symptoms, anxiety, fatigue, pain, and sleep quality, as well as to identify factors associated with negative illness perception. Methods A cross-sectional study was conducted with adolescents aged 12-18 years diagnosed with SLE during a clinic visit. Personal information was collected through a self-report questionnaire. Illness perception was assessed using Brief Illness Perception Questionnaire (B-IPQ), while psychological impact was evaluated using Patient Health Questionnaire for Adolescents (PHQ-A) and Generalized Anxiety Disorders Scale (GAD-7). PedsQL Multidimensional Fatigue Scale, Visual Analogue Scale of Pain (VAS-P), and Pittsburgh Sleep Quality Index (PSQI) were used to assess fatigue, pain, and sleep quality, respectively. Disease activity was measured by the Safety of Estrogens in Lupus Erythematosus National Assessment-SLE Disease Activity Index (SELENA-SLEDAI) and Physician Global Assessment (PGA), while organ damage was assessed using the SLICC/ACR Damage Index (SDI). The correlations between these measures were analyzed, and multivariable regression analysis was conducted to identify associated factors. Results The study included 102 patients, with a mean age of 15.2 ± 1.7 years, of whom 94.1% were female. Depressive symptoms (PHQ-A ≥5), anxiety (GAD-7 ≥7), pain (VAS-P > 3), and poor sleep quality (PSQI>5) were observed in 31.4%, 14.7%, 14.7%, and 29.4% of the patients, respectively. Within B-IPQ items, the timeline was perceived most negatively, while treatment control was perceived most positively. Negative illness perception moderately correlated with depressive symptoms (r = 0.487), anxiety (r = 0.459), and fatigue (r = 0.493), weakly correlated with pain (r = 0.334), sleep quality (r = 0.355) and PGA (r = 0.255), and no correlation with SELENA-SLEDAI and SDI. A self-reported poor relationship with friends (B coefficient 9.12, 95%CI: 3.22-15.01, p = .003) and a PGA score of 0.5 or higher (8.61, 3.52-13.69, p = .001) were associated with negative illness perception. Conclusions Psychological distress including depressive symptoms, anxiety, fatigue, pain, and sleep quality significantly correlated to illness perception in adolescent SLE. Further research is required to investigate the effects of illness perception on patient adherence and outcomes.