OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
OBJECTIVE: 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 lupuspatients, 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. METHODS: 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. RESULTS: 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. CONCLUSION: Delays to care ≥1 year exist in a notable minority of pediatric lupuspatients 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.
Authors: F Zulian; B H Athreya; R Laxer; A M Nelson; S K Feitosa de Oliveira; M G Punaro; R Cuttica; G C Higgins; L W A Van Suijlekom-Smit; T L Moore; C Lindsley; J Garcia-Consuegra; M O Esteves Hilário; L Lepore; C A Silva; C Machado; S M Garay; Y Uziel; G Martini; I Foeldvari; A Peserico; P Woo; J Harper Journal: Rheumatology (Oxford) Date: 2005-12-20 Impact factor: 7.580
Authors: Laura C Plantinga; Cristina Drenkard; Rachel E Patzer; Mitchel Klein; Michael R Kramer; Stephen Pastan; S Sam Lim; William M McClellan Journal: Arthritis Rheumatol Date: 2015-03 Impact factor: 10.995
Authors: Latisha D Heinlen; Micah T McClain; Joan Merrill; Yasmin W Akbarali; Colin C Edgerton; John B Harley; Judith A James Journal: Arthritis Rheum Date: 2007-07
Authors: Helen E Foster; Christiaan Scott; Carl J Tiderius; Matthew B Dobbs Journal: Best Pract Res Clin Rheumatol Date: 2020-07-26 Impact factor: 4.098