Transition of care and health-related outcomes in pediatric onset systemic lupus erythematosus
Source: Arthritis Care Res
Felsenstein S, Reiff A, Ramanathan A; Arthritis Care and Research (May 2015)
OBJECTIVES Transition from pediatric to adult care is a complex process and can negatively impact patients with chronic diseases. Here we describe the transition experience of patients with pediatric systemic lupus erythematosus (pSLE) and its associated outcomes in adulthood.
METHODS A telephone survey of 41 pSLE patients was conducted following their transition to adult care. Data on medical and social outcomes encountered during and after transition was collected. Health status was compared to retrospectively collected baseline data at pediatric discharge.
RESULTS Mean follow-up interval was 5 years (SD±3.7); mean age at follow-up 24 years (SD ±4.2). More than half of patients (22/41) 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 follow-up.
After transition most (35/41) patients were followed by an adult rheumatologist and the majority (37/41) reported recent symptoms of active disease; 41% (13/29) had developed symptoms suggestive of new renal manifestations following transition.
One third (15/41) 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 emotional and financial guidance.
Disease activity in pSLE remains high through adulthood, with morbidity primarily related to renal and neuropsychiatric manifestations. This article is protected by copyright. All rights reserved.