ACR Meeting Abstracts

ACR Meeting Abstracts

  • Home
  • Meetings Archive
    • ACR Convergence 2022
    • ACR Convergence 2021
    • ACR Convergence 2020
    • 2020 ACR/ARP PRSYM
    • 2019 ACR/ARP Annual Meeting
    • 2018 ACR/ARHP Annual Meeting
    • 2017-2009 Meetings
    • Download Abstracts
  • Keyword Index
  • Advanced Search
  • Your Favorites
    • Favorites
    • Login
    • View and print all favorites
    • Clear all your favorites
  • Meeting Resource Center

Abstract Number: 1481

A Description of the Transition Aged Population in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry

Aimee O. Hersh1, Mary Beth Son2 and Emily von Scheven3, 1Pediatrics/Rheumatology, University of Utah, Salt Lake City, UT, 2Division of Immunology, Children's Hospital Boston, Boston, MA, 3Dept of Pediatric Rheumatology, Univ of California San Francisco, San Francisco, CA

Meeting: 2015 ACR/ARHP Annual Meeting

Date of first publication: September 29, 2015

Keywords: Transition and pediatric rheumatology

  • Tweet
  • Email
  • Print
Session Information

Date: Monday, November 9, 2015

Session Title: Pediatric Rheumatology - Clinical and Therapeutic Aspects Posters. Juvenile Arthritis and Miscellaneous Rheumatic Diseases

Session Type: ACR Poster Session B

Session Time: 9:00AM-11:00AM

Background/Purpose: The chronic and complex nature of pediatric-onset rheumatic diseases (PRD) necessitates the need for effective health care transition from pediatric to adult providers. Prior studies suggest suboptimal transition and health outcomes for patients with PRD.  We utilized the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry to describe a large transition aged cohort with JIA and jSLE.

Methods: Baseline, cross-sectional data were obtained from the CARRA registry, a pediatric rheumatology database contributed to by 60 pediatric rheumatology centers in North America. Patients (pts) included were diagnosed with JIA or jSLE at ≤18 years (yrs) of age.  Pts ≥18 yrs of age were considered “transition aged.” Data abstracted included demographics, measures of disease activity (Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), Childhood Arthritis Questionnaire (CHAQ), Health Related Quality of Life (HRQOL), parent or self-report pain scores with a Likert scale: 0 = no pain,10 = very severe pain) and current and past medications at baseline visit. Descriptive statistics and tests of comparison were used to compare the variables between pts younger and older than 18 yrs with JIA and jSLE.

Results:

Data from 6572 JIA and 1014 jSLE pts were analyzed; 466 (7.1%) JIA pts and 251 (24.7%) jSLE pts were ≥18 yrs old at baseline visit (Table 1).

Transition JIA pts were more likely than younger JIA pts to have enthesitis related arthritis or rheumatoid factor positive polyarticular JIA subtypes and had higher pain scores (3.2 vs 2.6, p=0.000). There was no difference in insurance, CHAQ, or HRQOL between transition and younger JIA pts. Among the transition JIA pts, 13% were on oral steroids, 45% were on methotrexate and 67% were on a TNF inhibitor.

Transition jSLE pts had longer disease duration and were more likely to be uninsured than younger jSLE pts (6% vs. 2.8%, p=0.03), but there was no difference in CHAQ, HRQOL and pain scores. SLEDAI scores were moderate (median of 4.0, range 0-45), and younger pts had higher SLEDAI scores than transition pts (5.1 vs. 4.3, p=0.046). As in transition JIA pts, older jSLE pts demonstrated polypharmacy with 62% taking steroids, 48% taking mycophenalate mofetil, and 30% ever prescribed intravenous cyclophosphamide.

Disease measures in transition JIA and jSLE cohorts were also compared (Table 2).

Conclusion:  In this large cohort of transition aged pts with PRD, there was significant disease activity and polypharmacy. This analysis highlights the need for comprehensive transitional support for disease management, medication monitoring and follow-up care.

Table 1. 

 

Transition cohort (n = 717)

JIA, n (%)

466 (65)

jSLE, n (%)

251 (35)

Median age at baseline visit, yrs (range)

19.1 (18-32)

Mean age at disease onset, yrs (SD)

11.6 (4.5)

Female, n (%)

532 (74)

Ethnicity

 

     Hispanic/Latino n (%)

130 (18)

Race, n (%)

 

     White

508 (72)

     Black

125 (17)

     Asian

55 (7.7)

     Other

30 (7)

Uninsured, n (%)

27 (3.7)

Table 2. 

 

JIA (n=466)

jSLE (n=251)

p value

CHAQ score, median (range)

0.125 (0-3)

0 (0-3)

0.0015

HRQOL, n (%)

 

 

 

     Excellent/Very good/ Good

430 (92)

224 (89)

NS

Pain score, median (range)

3.26 (2.8)

2.7 (2.9)

0.0041


Disclosure: A. O. Hersh, None; M. B. Son, None; E. von Scheven, None.

To cite this abstract in AMA style:

Hersh AO, Son MB, von Scheven E. A Description of the Transition Aged Population in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). https://acrabstracts.org/abstract/a-description-of-the-transition-aged-population-in-the-childhood-arthritis-and-rheumatology-research-alliance-carra-registry/. Accessed February 2, 2023.
  • Tweet
  • Email
  • Print

« Back to 2015 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/a-description-of-the-transition-aged-population-in-the-childhood-arthritis-and-rheumatology-research-alliance-carra-registry/

Advanced Search

Your Favorites

You can save and print a list of your favorite abstracts during your browser session by clicking the “Favorite” button at the bottom of any abstract. View your favorites »

ACR Pediatric Rheumatology Symposium 2020

© COPYRIGHT 2023 AMERICAN COLLEGE OF RHEUMATOLOGY

Wiley

  • Home
  • Meetings Archive
  • Advanced Search
  • Meeting Resource Center
  • Online Journal
  • Privacy Policy
  • Permissions Policies
  • Cookie Preferences