The Road to Readiness: Transition Trajectories of Youth with Juvenile Idiopathic Arthritis and Juvenile-Onset Systemic Lupus Erythematosus

Objectives For youth with Juvenile Idiopathic Arthritis (JIA) and juvenile-onset Systemic Lupus Erythematosus (jSLE), the time leading up to the transfer from pediatric to adult care is especially vulnerable. During this period, it is essential to optimize skill development, independence and confidence in managing their own health. Few studies have explored how transition readiness changes over time in youth prior to transferring to adult care, or the role that sex and age may play in this trajectory of change.

Methods Patients 14-17 years with JIA or jSLE were recruited from the multidisciplinary McMaster Rheumatology Transition Clinic and asked to complete the 14-item Transition-Q (max 100) at each visit to assess transition readiness. After each patient completed the Transition-Q, a member of the healthcare team would discuss their responses with them and set goals for the next appointment. Descriptive statistics summarized patient demographics. Generalized estimating equations examined the predictive value of sex, number of visits, age at enrollment and age at diagnosis on changes in transition readiness while accounting for time.

Results Analyses included 384 observations from 94 participants. Number of clinic visits per participant ranged from 1 to 8, with varying time between visits. Age at diagnosis was not a significant predictor of changes in Transition-Q score (p=0.551). More visits (β=8.02, p=<0.001), female sex (β=6.87, p=0.031), and older age at enrollment (β=3.94, p<0.001) were significant positive predictors of improvements in Transition-Q score (Figure.). There was no significant interaction between sex and number of visits (p=0.17) indicating that the association between visit number and Transition-Q score did not differ meaningfully between males and females.

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Conclusion Our study demonstrated improvements in transition readiness with females, older age and longer follow-up predicting larger improvements. This suggests that males and those who are younger may require additional supports to optimize transition readiness prior to the transfer to adult care. It also suggests that these males and those who had fewer visits in pediatric care prior to the transfer may require more supports upon arrival in adult care.