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

Simple item page
dc.contributor.authorSpiegel, Lynn
dc.contributor.authorTucker, Lori
dc.contributor.authorDuffy, Karen W.
dc.contributor.authorLalloo, Chitra
dc.contributor.authorHundert, Amos
dc.contributor.authorBourre-Tessier, Josiane
dc.contributor.authorHazel, Elizabeth
dc.contributor.authorLuca, Nadia
dc.contributor.authorMosher, Dianne
dc.contributor.authorNguyen, Cynthia
dc.contributor.authorStringer, Elizabeth
dc.contributor.authorVictor, Charles
dc.contributor.authorStinson, Jennifer
dc.date.accessioned2021-06-06T00:03:19Z
dc.date.available2021-06-06T00:03:19Z
dc.date.issued2021-06-05
dc.date.updated2021-06-06T00:03:19Z
dc.description.abstractAbstract Background Current 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. Methods A 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. Results In 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. Conclusions The RACER is a reliable and valid instrument which is sensitive to change for assessing transition readiness in adolescents with JIA.
dc.identifier.citationPediatric Rheumatology. 2021 Jun 05;19(1):83
dc.identifier.doihttps://doi.org/10.1186/s12969-021-00579-1
dc.identifier.urihttp://hdl.handle.net/1880/113472
dc.identifier.urihttps://doi.org/10.11575/PRISM/44001
dc.language.rfc3066en
dc.rights.holderThe Author(s)
dc.titleDevelopment and validation of the RACER (Readiness for Adult Care in Rheumatology) transition instrument in youth with juvenile idiopathic arthritis
dc.typeJournal Article
Files
Original bundle
Now showing 1 - 1 of 1
Thumbnail Image
Name:
12969_2021_Article_579.pdf
Size:
527.77 KB
Format:
Adobe Portable Document Format
Download
License bundle
Now showing 1 - 1 of 1
No Thumbnail Available
Name:
license.txt
Size:
0 B
Format:
Item-specific license agreed upon to submission
Description:
Download
Collections
Open Access Publications