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

the Childhood Arthritis and Rheumatology Research Alliance INVESTIGATORS

Research output: Contribution to journalArticle

3 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)420-427
Number of pages8
JournalArthritis Care and Research
Volume70
Issue number3
DOIs
StatePublished - Mar 1 2018

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Rheumatology
Arthritis
Registries
Pediatrics
Research
Exanthema
Logistic Models
Demography
Morbidity
Rheumatologists
Therapeutics

ASJC Scopus subject areas

  • Rheumatology

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

In: Arthritis Care and Research, Vol. 70, No. 3, 01.03.2018, p. 420-427.

Research output: Contribution to journalArticle

the Childhood Arthritis and Rheumatology Research Alliance INVESTIGATORS. / Delays to Care in Pediatric Lupus Patients : Data From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry. In: Arthritis Care and Research. 2018 ; Vol. 70, No. 3. pp. 420-427.
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title = "Delays to Care in Pediatric Lupus Patients: Data From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry",
abstract = "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.",
author = "{the Childhood Arthritis and Rheumatology Research Alliance INVESTIGATORS} and Rubinstein, {Tamar B.} and Mowrey, {Wenzhu B.} and Ilowite, {Norman T.} and Wahezi, {Dawn M.} and L. Abramson and E. Anderson and M. Andrew and N. Battle and M. Becker and H. Benham and T. Beukelman and J. Birmingham and P. Blier and A. Brown and H. Brunner and A. Cabrera and D. Canter and D. Carlton and B. Caruso and L. Ceracchio and E. Chalom and J. Chang and P. Charpentier and K. Clark and J. Dean and F. Dedeoglu and B. Feldman and P. Ferguson and M. Fox and K. Francis and M. Gervasini and D. Goldsmith and G. Gorton and B. Gottlieb and T. Graham and T. Griffin and H. Grosbein and S. Guppy and H. Haftel and D. Helfrich and G. Higgins and A. Hillard and Hollister, {J. R.} and J. Hsu and A. Hudgins and C. Hung and A. Huttenlocher and A. Imlay and L. Imundo and Jerath, {Rita S}",
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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 - Imundo, L.

AU - Jerath, Rita S

PY - 2018/3/1

Y1 - 2018/3/1

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.

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U2 - 10.1002/acr.23285

DO - 10.1002/acr.23285

M3 - Article

C2 - 28544820

AN - SCOPUS:85041642659

VL - 70

SP - 420

EP - 427

JO - Arthritis Care and Research

JF - Arthritis Care and Research

SN - 2151-464X

IS - 3

ER -