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Delays to Care in Pediatric Lupus Patients: Data From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry
Journal article   Open access   Peer reviewed

Delays to Care in Pediatric Lupus Patients: Data From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry

Tamar B Rubinstein, Wenzhu B Mowrey, Norman T Ilowite, Dawn M Wahezi and Childhood Arthritis and Rheumatology Research Alliance INVESTIGATORS
Arthritis care & research (2010), Vol.70(3), pp.420-427
03/2018
DOI: 10.1002/acr.23285
PMCID: PMC5700859
PMID: 28544820
url
https://doi.org/10.1002/acr.23285View
Published (Version of record) Open Access

Abstract

Prompt treatment for lupus is important to prevent morbidity. A potential barrier to early treatment of pediatric lupus is delayed presentation to a pediatric rheumatologist. To better understand factors contributing to delayed presentation among pediatric lupus patients, we examined differences in demographic and clinical characteristics of lupus patients within the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry with regard to time between symptom onset and presentation to a pediatric rheumatologist. We analyzed data from 598 CARRA Legacy Registry participants for differences between those who presented early (within <1 month of symptom onset), between 1-3 months (typical presentation), with moderate delays (3-12 months), and with severe delays (≥1 year). Factors associated with early presentation, moderate delay, and severe delay were determined by multinomial logistic regression. Forty-four percent of patients presented early, while 23% had moderate delays and 9% had severe delays. Family history of lupus, absence of discoid rash, and location in a state with a higher density of pediatric rheumatologists were associated with earlier presentation. Younger age, low household income (<$25,000 per year), and a family history of lupus were associated with severe delay. Delays to care ≥1 year exist in a notable minority of pediatric lupus patients from the CARRA Legacy Registry. In this large and diverse sample of patients, access to care and family resources played an important role in predicting time to presentation to a pediatric rheumatologist.
 Registries Predictive Value of Tests Rheumatology - methods Time-to-Treatment Lupus Erythematosus, Systemic - epidemiology Humans Risk Factors Male Treatment Outcome Delayed Diagnosis Lupus Erythematosus, Systemic - therapy Lupus Erythematosus, Systemic - diagnosis Time Factors Pediatrics - methods Adolescent Age of Onset Female Retrospective Studies North America - epidemiology Child

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