Adolescent Health Care Needs and Relationship to Disease in Patients With Childhood‐Onset Systemic Lupus Erythematosus

Objective Our objective was to characterize adolescent health and psychosocial issues in patients with childhood‐onset systemic lupus erythematosus (cSLE) and evaluate demographic and disease characteristics associated with adolescent health. Methods We retrospectively examined adolescents aged 12 to 18 years with cSLE seen at the Hospital for Sick Children meeting the American College of Rheumatology/Systemic Lupus International Collaborating Clinics classification criteria, assessed by adolescent medicine in the cSLE clinic between 2018 and 2020. Adolescent health issues were characterized using the Home, Education/Employment, Activities, Diet/Drugs, Sexuality, Suicide/mood (HEADDSS) framework. Issues were classified as presenting and/or identified; adolescent health burden was tabulated as the number of distinct adolescent issues per patient. Multiple Poisson regression models examined associations between patient and disease characteristics (age, sex, material deprivation, disease activity, disease damage, and high‐dose glucocorticoid exposure) and adolescent health issues. Results A total of 108 (60%) of 181 adolescents with cSLE were seen by adolescent medicine, with a median of 2 (interquartile range [IQR] 1–3) visits and a median of 2 (IQR 1–5) adolescent health issues during the study period. Common issues were mood (presenting in 21% vs identified in 50%), sleep (27% vs 2%), school and education (26% vs 1%), and nonadherence (23% vs 8%). Psychoeducation was provided by adolescent medicine to 54% of patients. High‐dose glucocorticoids (risk ratio [RR] 1.82, 95% confidence interval [CI] 1.41–2.35, P < 0.001), material deprivation (RR 1.17, 95% CI 1.04–1.30, P = 0.007), and lower SLE Disease Activity Index scores (RR 0.95, 95% CI 0.92–0.98, P = 0.004) were associated with higher adolescent health burden. Conclusion Adolescents with cSLE experience many adolescent issues, especially low mood. High‐dose glucocorticoids and social marginalization are associated with greater adolescent health burden. This study highlights the importance of addressing adolescent health needs as part of routine care.