Disease activity and transition outcomes in a childhood-onset systemic lupus erythematosus cohort

Area of Science:

• Rheumatology
• Pediatric Rheumatology
• Transition of Care

Background:

• Childhood-onset systemic lupus erythematosus (cSLE) requires lifelong management, necessitating effective transition from pediatric to adult healthcare.
• The chronicity and potential severity of cSLE underscore the importance of seamless care transitions to prevent adverse outcomes.

Purpose of the Study:

• To evaluate transition outcomes in a cohort of patients with cSLE moving from pediatric to adult rheumatology care.
• To identify factors associated with gaps in care, utilization, and mental health challenges during the transition period.

Main Methods:

• Retrospective analysis of 50 cSLE patients followed in an adult lupus clinic after diagnosis in childhood.
• Data collected included sociodemographics, mental health, disease activity (SLEDAI), damage (SLICC), adherence, and care gaps over the first three years in adult care.
• Multivariable logistic and Poisson regression analyses were used to identify predictors of transition-related outcomes.

Main Results:

• SLE Disease Activity Index (SLEDAI) scores remained stable, but Systemic Lupus International Collaborating Clinics/ACR Damage Index for SLE (SLICC) scores increased significantly.
• Rates of depression and anxiety increased from 10% to 26% post-transition.
• A significant delay (mean 9 months) was observed between pediatric and adult provider visits, with nearly 75% experiencing care gaps. White race, lower education, and non-adherence predicted missed appointments.

Conclusions:

• The cSLE transition process is associated with prolonged delays in care and frequent gaps, despite stable disease activity.
• Increased prevalence of anxiety and depression highlights the psychosocial burden on transitioning cSLE patients.
• Further research is needed to develop and implement strategies for optimizing the cSLE transition of care.