Individual and Socioecological Resilience in Childhood-Onset Systemic Lupus Erythematosus: Associations With Patient Characteristics and Psychosocial Patient-Reported Outcomes.

Abstract

This study investigates individual and socioecological resilience and its relationship with sociodemographic and disease characteristics, as well as psychosocial patient-reported outcome measures (PROMs) in childhood-onset systemic lupus erythematosus (cSLE). We conducted a cross-sectional study of patients with cSLE, ages 11-22 years, at a Canadian tertiary center from October 2021 to July 2024. The 10-item Connor-Davidson Resilience Scale (CD-RISC-10) assessed individual resilience. The Child and Youth Resilience Measure-Revised (CYRM-R) assessed socioecological resilience. Linear regression models examined associations between resilience with sociodemographic (eg, health literacy, adverse childhood experiences [ACEs]) and disease factors (eg, 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. Of 49 participants, the mean score for individual psychological resilience was 26.0 (SD 7.1; CD-RISC-10), and the mean score for socioecological resilience was 73.4 (SD 9.1; CYRM-R). Higher resilience on CD-RISC-10 (β 0.99, 95% CI 0.45-1.55, <i>P</i> < 0.01) and CYRM-R (β 0.84, 95% CI 0.13-1.55, <i>P</i> = 0.02) was associated with better health literacy on the communication subscale. Lower CYRM-R scores were associated with higher number of ACEs (β -1.02, 95% CI -1.88 to -0.17; <i>P</i> = 0.02). For PROMs, lower scores for both individual and socioecological resilience correlated with worse depressive symptoms (<i>r</i> -0.44, <i>P</i> = 0.003 for CD-RISC-10; <i>r</i> -0.55, <i>P</i> = 0.001 for CYRM-R) and executive functioning (<i>r</i> -0.49, <i>P</i> = 0.002 for CD-RISC-10; <i>r</i> -0.56, <i>P</i> = 0.002 for CYRM-R). 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.