The systemic juvenile idiopathic arthritis cohort of the childhood arthritis and rheumatology research alliance registry

2010-2013

CARRA Legacy Registry Investigators

Research output: Contribution to journalArticle

18 Citations (Scopus)

Abstract

Objective. We aimed to identify the (1) demographic/clinical characteristics, (2) medication usage trends, (3) variables associated with worse disease activity, and (4) characteristics of patients with persistent chronic arthritis in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry's systemic juvenile idiopathic arthritis (sJIA) cohort. Methods. Demographics, disease activity measures, and medications at enrollment of patients with sJIA in the CARRA Registry were analyzed using descriptive statistics. Multivariate analyses were conducted to identify associations with increased disease activity. Medication usage frequencies were calculated by year. Results. There were 528 patients with sJIA enrolled in the registry (2010-2013). There were 435 patients who had a complete dataset; of these, 372 met the International League of Associations for Rheumatology criteria and were included in the analysis. At enrollment, median disease duration and joint count were 3.7 years and 0, respectively; 16.4% had a rash and 6.7% had a fever. Twenty-six percent were taking interleukin 1 (IL-1) inhibitors and 29% glucocorticoids. Disease-modifying antirheumatic drugs and tumor necrosis factor inhibitors use decreased, while IL-6 inhibitor use increased between 2010 and 2013. African American patients had worse joint counts (p = 0.003), functional status (p = 0.01), and physician's global assessment (p = 0.008). Of the 255 subjects with > 2 years of disease duration, 56% had no arthritis or systemic symptoms, while 32% had persistent arthritis only. Conclusion.Most patients in the largest sJIA cohort reported to date had low disease activity. Practice patterns for choice of biologic agents appeared to change over the study period. Nearly one-third had persistent arthritis without systemic symptoms > 2 years after onset. African Americans were associated with worse disease activity. Strategies are needed to improve outcomes in subgroups with poor prognosis.

Original languageEnglish (US)
Pages (from-to)1755-1762
Number of pages8
JournalJournal of Rheumatology
Volume43
Issue number9
DOIs
StatePublished - Sep 1 2016

Fingerprint

Juvenile Arthritis
Rheumatology
Arthritis
Registries
Research
African Americans
Demography
Antirheumatic Agents
Joint Diseases
Biological Factors
Exanthema
Interleukin-1
Glucocorticoids
Interleukin-6
Fever
Multivariate Analysis
Tumor Necrosis Factor-alpha
Joints
Physicians

Keywords

  • Epidemiology
  • Systemic juvenile idiopathic arthritis
  • Treatment

ASJC Scopus subject areas

  • Immunology and Allergy
  • Rheumatology
  • Immunology

Cite this

The systemic juvenile idiopathic arthritis cohort of the childhood arthritis and rheumatology research alliance registry : 2010-2013. / CARRA Legacy Registry Investigators.

In: Journal of Rheumatology, Vol. 43, No. 9, 01.09.2016, p. 1755-1762.

Research output: Contribution to journalArticle

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abstract = "Objective. We aimed to identify the (1) demographic/clinical characteristics, (2) medication usage trends, (3) variables associated with worse disease activity, and (4) characteristics of patients with persistent chronic arthritis in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry's systemic juvenile idiopathic arthritis (sJIA) cohort. Methods. Demographics, disease activity measures, and medications at enrollment of patients with sJIA in the CARRA Registry were analyzed using descriptive statistics. Multivariate analyses were conducted to identify associations with increased disease activity. Medication usage frequencies were calculated by year. Results. There were 528 patients with sJIA enrolled in the registry (2010-2013). There were 435 patients who had a complete dataset; of these, 372 met the International League of Associations for Rheumatology criteria and were included in the analysis. At enrollment, median disease duration and joint count were 3.7 years and 0, respectively; 16.4{\%} had a rash and 6.7{\%} had a fever. Twenty-six percent were taking interleukin 1 (IL-1) inhibitors and 29{\%} glucocorticoids. Disease-modifying antirheumatic drugs and tumor necrosis factor inhibitors use decreased, while IL-6 inhibitor use increased between 2010 and 2013. African American patients had worse joint counts (p = 0.003), functional status (p = 0.01), and physician's global assessment (p = 0.008). Of the 255 subjects with > 2 years of disease duration, 56{\%} had no arthritis or systemic symptoms, while 32{\%} had persistent arthritis only. Conclusion.Most patients in the largest sJIA cohort reported to date had low disease activity. Practice patterns for choice of biologic agents appeared to change over the study period. Nearly one-third had persistent arthritis without systemic symptoms > 2 years after onset. African Americans were associated with worse disease activity. Strategies are needed to improve outcomes in subgroups with poor prognosis.",
keywords = "Epidemiology, Systemic juvenile idiopathic arthritis, Treatment",
author = "{CARRA Legacy Registry Investigators} and Ginger Janow and Schanberg, {Laura E.} and Soko Setoguchi and Victor Hasselblad and Mellins, {Elizabeth D.} and Rayfel Schneider and Yukiko Kimura and L. Abramson and E. Anderson and M. Andrew and N. Battle and H. Benham and T. Beukelman and Birmingham, {J. D.} and P. Blier 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 C. Debolt and F. Dedeoglu and Ferguson, {P. J.} and M. Fox and K. Francis and M. Gervasini 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 M. Ibarra and Ilowite, {Norman Todd} and A. Imlay and L. Imundo",
year = "2016",
month = "9",
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T1 - The systemic juvenile idiopathic arthritis cohort of the childhood arthritis and rheumatology research alliance registry

T2 - 2010-2013

AU - CARRA Legacy Registry Investigators

AU - Janow, Ginger

AU - Schanberg, Laura E.

AU - Setoguchi, Soko

AU - Hasselblad, Victor

AU - Mellins, Elizabeth D.

AU - Schneider, Rayfel

AU - Kimura, Yukiko

AU - Abramson, L.

AU - Anderson, E.

AU - Andrew, M.

AU - Battle, N.

AU - Benham, H.

AU - Beukelman, T.

AU - Birmingham, J. D.

AU - Blier, P.

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 - Debolt, C.

AU - Dedeoglu, F.

AU - Ferguson, P. J.

AU - Fox, M.

AU - Francis, K.

AU - Gervasini, M.

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 - Ibarra, M.

AU - Ilowite, Norman Todd

AU - Imlay, A.

AU - Imundo, L.

PY - 2016/9/1

Y1 - 2016/9/1

N2 - Objective. We aimed to identify the (1) demographic/clinical characteristics, (2) medication usage trends, (3) variables associated with worse disease activity, and (4) characteristics of patients with persistent chronic arthritis in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry's systemic juvenile idiopathic arthritis (sJIA) cohort. Methods. Demographics, disease activity measures, and medications at enrollment of patients with sJIA in the CARRA Registry were analyzed using descriptive statistics. Multivariate analyses were conducted to identify associations with increased disease activity. Medication usage frequencies were calculated by year. Results. There were 528 patients with sJIA enrolled in the registry (2010-2013). There were 435 patients who had a complete dataset; of these, 372 met the International League of Associations for Rheumatology criteria and were included in the analysis. At enrollment, median disease duration and joint count were 3.7 years and 0, respectively; 16.4% had a rash and 6.7% had a fever. Twenty-six percent were taking interleukin 1 (IL-1) inhibitors and 29% glucocorticoids. Disease-modifying antirheumatic drugs and tumor necrosis factor inhibitors use decreased, while IL-6 inhibitor use increased between 2010 and 2013. African American patients had worse joint counts (p = 0.003), functional status (p = 0.01), and physician's global assessment (p = 0.008). Of the 255 subjects with > 2 years of disease duration, 56% had no arthritis or systemic symptoms, while 32% had persistent arthritis only. Conclusion.Most patients in the largest sJIA cohort reported to date had low disease activity. Practice patterns for choice of biologic agents appeared to change over the study period. Nearly one-third had persistent arthritis without systemic symptoms > 2 years after onset. African Americans were associated with worse disease activity. Strategies are needed to improve outcomes in subgroups with poor prognosis.

AB - Objective. We aimed to identify the (1) demographic/clinical characteristics, (2) medication usage trends, (3) variables associated with worse disease activity, and (4) characteristics of patients with persistent chronic arthritis in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry's systemic juvenile idiopathic arthritis (sJIA) cohort. Methods. Demographics, disease activity measures, and medications at enrollment of patients with sJIA in the CARRA Registry were analyzed using descriptive statistics. Multivariate analyses were conducted to identify associations with increased disease activity. Medication usage frequencies were calculated by year. Results. There were 528 patients with sJIA enrolled in the registry (2010-2013). There were 435 patients who had a complete dataset; of these, 372 met the International League of Associations for Rheumatology criteria and were included in the analysis. At enrollment, median disease duration and joint count were 3.7 years and 0, respectively; 16.4% had a rash and 6.7% had a fever. Twenty-six percent were taking interleukin 1 (IL-1) inhibitors and 29% glucocorticoids. Disease-modifying antirheumatic drugs and tumor necrosis factor inhibitors use decreased, while IL-6 inhibitor use increased between 2010 and 2013. African American patients had worse joint counts (p = 0.003), functional status (p = 0.01), and physician's global assessment (p = 0.008). Of the 255 subjects with > 2 years of disease duration, 56% had no arthritis or systemic symptoms, while 32% had persistent arthritis only. Conclusion.Most patients in the largest sJIA cohort reported to date had low disease activity. Practice patterns for choice of biologic agents appeared to change over the study period. Nearly one-third had persistent arthritis without systemic symptoms > 2 years after onset. African Americans were associated with worse disease activity. Strategies are needed to improve outcomes in subgroups with poor prognosis.

KW - Epidemiology

KW - Systemic juvenile idiopathic arthritis

KW - Treatment

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U2 - 10.3899/jrheum.150997

DO - 10.3899/jrheum.150997

M3 - Article

VL - 43

SP - 1755

EP - 1762

JO - Journal of Rheumatology

JF - Journal of Rheumatology

SN - 0315-162X

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