Transition of patients with systemic lupus erythematosus from pediatric to adult-oriented rheumatology care

Abstract

Background/aim: The transition from pediatric to adult-oriented care for individuals with juvenile-onset systemic lupus erythematosus (SLE) poses significant challenges. This study aimed to assess the outcomes of transitioning patients with juvenile-onset SLE from pediatric to adult-oriented care.

Materials and methods: Patients with juvenile-onset SLE were included in the study. They were transferred in face-to-face meetings where at least one pediatric rheumatologist and one adult rheumatologist were present (transition time: October-December 2020).

Results: The median (25th-75th percentile) age at diagnosis and the time of the first examination in an adult-oriented rheumatology department of the included 65 SLE patients were 14.3 (10.9-15.1) years and 19.2 (18.5-20.4) years, respectively (female/male ratio: 7.1). There was no difference in clinical findings related to SLE between the last pediatric care visit and the last adult-oriented care visit other than constitutional symptoms being more prevalent in adult-oriented care (p = 0.039). There was a higher rate of low medication adherence in the post- than pretransition period (p = 0.003). The number of patients admitted to the emergency department during follow-up in adult-oriented care was higher (p = 0.009). Additionally, patients were more likely to miss at least one scheduled appointment in the post- than pretransition period (p = 0.002).

Conclusion: We observed that patients with juvenile-onset SLE had more constitutional symptoms, lower medication compliance, higher rates of emergency department visits, and more missed appointments in the posttransition period despite a face-to-face structured transition process. We hope that future studies will offer solutions to the problems in transitional care.

Keywords: Adult care; juvenile-onset; pediatric care; systemic lupus erythematosus; transition.