TY - JOUR
T1 - Delays to Care in Pediatric Lupus Patients
T2 - Data From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry
AU - the Childhood Arthritis and Rheumatology Research Alliance INVESTIGATORS
AU - Rubinstein, Tamar B.
AU - Mowrey, Wenzhu B.
AU - Ilowite, Norman T.
AU - Wahezi, Dawn M.
AU - Abramson, L.
AU - Anderson, E.
AU - Andrew, M.
AU - Battle, N.
AU - Becker, M.
AU - Benham, H.
AU - Beukelman, T.
AU - Birmingham, J.
AU - Blier, P.
AU - Brown, A.
AU - Brunner, H.
AU - Cabrera, A.
AU - Canter, D.
AU - Carlton, D.
AU - Caruso, B.
AU - Ceracchio, L.
AU - Chalom, E.
AU - Chang, J.
AU - Charpentier, P.
AU - Clark, K.
AU - Dean, J.
AU - Dedeoglu, F.
AU - Feldman, B.
AU - Ferguson, P.
AU - Fox, M.
AU - Francis, K.
AU - Gervasini, M.
AU - Goldsmith, D.
AU - Gorton, G.
AU - Gottlieb, B.
AU - Graham, T.
AU - Griffin, T.
AU - Grosbein, H.
AU - Guppy, S.
AU - Haftel, H.
AU - Helfrich, D.
AU - Higgins, G.
AU - Hillard, A.
AU - Hollister, J. R.
AU - Hsu, J.
AU - Hudgins, A.
AU - Hung, C.
AU - Huttenlocher, A.
AU - Imlay, A.
AU - Syed, R.
AU - White, A.
N1 - Publisher Copyright:
© 2017, American College of Rheumatology
PY - 2018/3
Y1 - 2018/3
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85041642659&partnerID=8YFLogxK
U2 - 10.1002/acr.23285
DO - 10.1002/acr.23285
M3 - Article
C2 - 28544820
AN - SCOPUS:85041642659
SN - 2151-464X
VL - 70
SP - 420
EP - 427
JO - Arthritis Care and Research
JF - Arthritis Care and Research
IS - 3
ER -