Affordable Access

Access to the full text

Development and validation of the RACER (Readiness for Adult Care in Rheumatology) transition instrument in youth with juvenile idiopathic arthritis

Authors
  • Spiegel, Lynn1
  • Tucker, Lori2
  • Duffy, Karen Watanabe3
  • Lalloo, Chitra4, 5
  • Hundert, Amos4
  • Bourre-Tessier, Josiane6
  • Hazel, Elizabeth7
  • Luca, Nadia8
  • Mosher, Dianne9
  • Nguyen, Cynthia4
  • Stringer, Elizabeth10
  • Victor, Charles5, 11
  • Stinson, Jennifer4, 5, 5, 12
  • 1 Hospital for Sick Children, University of Toronto, Toronto, Canada , Toronto (Canada)
  • 2 University of British Columbia, Vancouver, Canada , Vancouver (Canada)
  • 3 University of Ottawa, Ottawa, Canada , Ottawa (Canada)
  • 4 The Hospital for Sick Children, Toronto, Canada , Toronto (Canada)
  • 5 University of Toronto, Toronto, Canada , Toronto (Canada)
  • 6 Centre hospitalier de l’Université de Montréal, Montreal, Quebec, Canada , Montreal (Canada)
  • 7 McGill University Health Centre, Montréal, Quebec, Canada , Montréal (Canada)
  • 8 Alberta Children’s Hospital, University of Calgary, Calgary, Canada , Calgary (Canada)
  • 9 University of Calgary and Cumming School of Medicine, Calgary, Canada , Calgary (Canada)
  • 10 IWK Health, Dalhousie University, Halifax, Canada , Halifax (Canada)
  • 11 Institute for Clinical Evaluative Sciences, Toronto, Canada , Toronto (Canada)
  • 12 The Hospital for Sick Children Peter Gilgan Centre for Research and Learning, 686 Bay Street, Room 069715, Toronto, ON, M5G 0A4, Canada , Toronto (Canada)
Type
Published Article
Journal
Pediatric Rheumatology
Publisher
Springer Science and Business Media LLC
Publication Date
Jun 05, 2021
Volume
19
Issue
1
Identifiers
DOI: 10.1186/s12969-021-00579-1
Source
Springer Nature
License
Green

Abstract

BackgroundCurrent evidence suggests that many adolescents with juvenile idiopathic arthritis (JIA) do not successfully transfer to adult care, which can result in adverse health outcomes. Although a growing number of clinical programs have been designed to support healthcare transition, there is a lack of psychometrically sound instruments to evaluate their impact on development of transition-related knowledge and skills in youth with JIA. The purpose of this study was to develop and validate RACER (Readiness for Adult Care in Rheumatology), a self-administered instrument designed to measure stages of readiness for key transition-related skills in adolescents with JIA.MethodsA phased approach was used to develop and evaluate the validity and reliability of RACER. Phase 1 A was a consensus conference with 19 key stakeholders to inform instrument domains and items. Phase 1B determined initial content validity using a sample of 30 adolescents with JIA and 15 clinical and research experts. Finally, Phase 2 was a prospective cohort study with repeated measures to evaluate the internal consistency, test-retest reliability, construct validity and responsiveness of the instrument within a sample of adolescents with JIA.ResultsIn Phase 1 A, initial item generation yielded a total of 242 items across six domains from the consensus conference, which was subsequently reduced to a 32-item instrument. Phase 1B established the content validity of the instrument in adolescents with JIA. In the Phase 2 study, with a sample of 96 adolescents, the RACER instrument exhibited good internal consistency in five of its six subscales (Cronbach’s α > 0.7), and strong test-retest reliability between the first two administrations (ICC = 0.83). It also showed robust convergent validity by highly correlating with measures of self-management (SMSAG, rho = 0.73) and transition (TRANSITION-Q, rho = 0.76). The RACER was not correlated with unrelated measures (discriminant validity; PedsQL, rho = 0.14). The RACER scores increased significantly over time as expected, supporting measure responsiveness.ConclusionsThe RACER is a reliable and valid instrument which is sensitive to change for assessing transition readiness in adolescents with JIA.

Report this publication

Statistics

Seen <100 times