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

  • 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)
Published Article
Pediatric Rheumatology
Springer Science and Business Media LLC
Publication Date
Jun 05, 2021
DOI: 10.1186/s12969-021-00579-1
Springer Nature


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.

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