Transition of Care and Health-Related Outcomes in Pediatric-Onset Systemic Lupus Erythematosus.
OBJECTIVE
Transition from pediatric to adult care is a complex process and can negatively impact patients with chronic disease. We describe the transition experience of patients with pediatric-onset systemic lupus erythematosus (SLE) and its associated outcomes in adulthood.


METHODS
A telephone survey of 41 pediatric-onset SLE patients was conducted following their transition to adult care. Data on medical and social outcomes during and after the transition were collected. Health status was compared to retrospectively collected baseline data at pediatric discharge.


RESULTS
The mean ± SD followup interval was 5 ± 3.7 years; the mean ± SD age at followup was 24 ± 4.2 years. More than half of patients (22 of 41) experienced transition difficulties, primarily due to loss of insurance and emotional readjustment, which were associated with poor symptom control (P = 0.03) and multiple organ system involvement (P = 0.05) at followup. After the transition, most patients (35 of 41) were followed by an adult-care rheumatologist, and the majority (37 of 41) reported recent symptoms of active disease; 41% (13 of 29) had developed symptoms suggestive of new renal manifestations following transition. One-third (15 of 41) reported new or ongoing neuropsychiatric symptoms. Both renal and neuropsychiatric manifestations were associated with unemployment (P < 0.05). Direct referral by a pediatric rheumatologist was associated with fewer hospitalizations following transition (P = 0.04).


CONCLUSIONS
The majority of patients transitioned successfully to adult rheumatologic care. Major challenges were loss of insurance and attachment to pediatric providers, highlighting the importance of a structured transition process that focuses on providing emotional and financial guidance. Disease activity in pediatric-onset SLE remains high throughout adulthood, with morbidity primarily related to renal and neuropsychiatric manifestations.
Children's Hospital Los Angeles, Los Angeles, California.
Susanna
S
Felsenstein
Children's Hospital Los Angeles and the Keck School of Medicine of the University of Southern California, Los Angeles, California.
Andreas O
AO
Reiff
Children's Hospital Los Angeles and the Keck School of Medicine of the University of Southern California, Los Angeles, California.
Anusha
A
Ramanathan
D000328:Adult; D017668:Age of Onset; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006306:Health Surveys / Q000379:methods; D006801:Humans; D007407:Interviews as Topic / Q000379:methods; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis* / Q000628:therapy*; D008297:Male; D012189:Retrospective Studies; D060305:Transition to Adult Care / Q000639:trends*; D016896:Treatment Outcome; D055815:Young Adult