Individual and Socio-ecological Resilience in Childhood-Onset Systemic Lupus Erythematosus: Associations with Patient Characteristics and Psychosocial Patient-Reported Outcomes.

Abstract

OBJECTIVE This study investigates individual and socio-ecological resilience and their relationship with sociodemographic and disease characteristics, and psychosocial patient-reported outcomes in childhood-onset systemic lupus erythematosus (cSLE). METHODS We conducted a cross-sectional study of patients with cSLE ages 11-22 years at a Canadian tertiary center from October 2021-July 2024. The Connor-Davidson Resilience Scale (CD-RISC 10) assessed individual resilience. The Child and Youth Resilience Measure-Revised (CYRM-R) assessed socio-ecological resilience. Linear regression models examined associations between resilience with socio-demographic (e.g., health literacy, adverse childhood experiences (ACEs)) and disease factors (e.g., age of onset, duration, disease activity). Pearson correlations determined relationships between resilience and patient-reported depressive and anxiety symptoms, executive functioning, pain interference and fatigue. RESULTS Of 49 participants, mean scores for individual psychological resilience were CD-RISC 10 of 26.0 (SD=7.1) and socio-ecological resilience were CYRM-R of 73.4 (SD=9.1). Higher resilience on CD-RISC 10 (b=0.99, 95%CI [0.45 to 1.55], p<0.01) and CYRM-R (b=0.84, 95%CI [0.13 to 1.55], p=0.02) was associated with better health literacy on the communication subscale. Lower CYRM-R scores were associated with higher number of ACEs (b=-1.02, 95% CI [-1.88 to -0.17], p=0.02). For patient-reported outcomes, lower scores for both individual and socio-ecological resilience correlated with worse depressive symptoms (r=-0.44, p=0.003 for CD-RISC 10; r=-0.55, p=0.001 for CYRM-R) and executive functioning (r=-0.49, p=0.002 for CD-RISC 10; r=-0.56, p=0.002 for CYRM-R). CONCLUSION Greater resilience was associated with fewer ACEs, and better health-related communication, patient-reported mental health and executive functioning. Findings highlight the importance of fostering resilience to improve outcomes in youth with cSLE.