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Patient-Reported Outcomes Among Transition-Age Young Adults With Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry.

Publication ,  Journal Article
Smitherman, EA; Chahine, RA; Bitencourt, N; Rahman, AKMF; Lawson, EF; Chang, JC; CARRA Registry Investigators and CARRA Transition Workgroup,
Published in: J Rheumatol
January 2023

OBJECTIVE: To evaluate patient-reported care utilization and outcomes among young adults with juvenile idiopathic arthritis (JIA), including factors associated with complete transfer to adult rheumatology. METHODS: We included young adults with JIA enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry from 2015 to 2019 with age ≥ 18 years at their last clinical site visit. We used data from the CARRA Registry Long-term Follow-up program, which follows inactive CARRA Registry patients and collects patient-reported information through phone surveys. We compared the characteristics of respondents with complete and incomplete transfer to adult rheumatology care at their first Long-term Follow-up phone survey. RESULTS: We identified 540 young adults with JIA; 187 (35%) responded to the Long-term Follow-up phone survey. The 54% of respondents with complete transfer to adult rheumatology were slightly older and reported more self-assessed disease activity, morning stiffness, and pain compared to those with incomplete transfer. Biologic use was high at both timepoints and did not differ by transfer status. Patients who completed the transfer were more likely to have private insurance and be actively pursuing postsecondary education compared to those with an incomplete transfer. Across the cohort, 65% reported problems with pain or discomfort and 45% with anxiety or depression. CONCLUSION: Young adult respondents with JIA in the CARRA Registry commonly report persistent medication use, but still report more problems with pain as compared to population norms. Additional work is needed to understand how best to address comorbid pain around the period of transition to adult care.

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Published In

J Rheumatol

DOI

EISSN

1499-2752

Publication Date

January 2023

Volume

50

Issue

1

Start / End Page

98 / 106

Location

Canada

Related Subject Headings

  • Young Adult
  • Rheumatology
  • Registries
  • Patient Reported Outcome Measures
  • Pain
  • Humans
  • Child
  • Arthritis, Juvenile
  • Arthritis & Rheumatology
  • Adolescent
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Smitherman, E. A., Chahine, R. A., Bitencourt, N., Rahman, A. K. M. F., Lawson, E. F., Chang, J. C., & CARRA Registry Investigators and CARRA Transition Workgroup, . (2023). Patient-Reported Outcomes Among Transition-Age Young Adults With Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry. J Rheumatol, 50(1), 98–106. https://doi.org/10.3899/jrheum.220514
Smitherman, Emily A., Rouba A. Chahine, Nicole Bitencourt, AKM Fazlur Rahman, Erica F. Lawson, Joyce C. Chang, and Joyce C. CARRA Registry Investigators and CARRA Transition Workgroup. “Patient-Reported Outcomes Among Transition-Age Young Adults With Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry.J Rheumatol 50, no. 1 (January 2023): 98–106. https://doi.org/10.3899/jrheum.220514.
Smitherman EA, Chahine RA, Bitencourt N, Rahman AKMF, Lawson EF, Chang JC, et al. Patient-Reported Outcomes Among Transition-Age Young Adults With Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry. J Rheumatol. 2023 Jan;50(1):98–106.
Smitherman, Emily A., et al. “Patient-Reported Outcomes Among Transition-Age Young Adults With Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry.J Rheumatol, vol. 50, no. 1, Jan. 2023, pp. 98–106. Pubmed, doi:10.3899/jrheum.220514.
Smitherman EA, Chahine RA, Bitencourt N, Rahman AKMF, Lawson EF, Chang JC, CARRA Registry Investigators and CARRA Transition Workgroup. Patient-Reported Outcomes Among Transition-Age Young Adults With Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry. J Rheumatol. 2023 Jan;50(1):98–106.

Published In

J Rheumatol

DOI

EISSN

1499-2752

Publication Date

January 2023

Volume

50

Issue

1

Start / End Page

98 / 106

Location

Canada

Related Subject Headings

  • Young Adult
  • Rheumatology
  • Registries
  • Patient Reported Outcome Measures
  • Pain
  • Humans
  • Child
  • Arthritis, Juvenile
  • Arthritis & Rheumatology
  • Adolescent