Development and validation of the Kids Disability Screen for children with juvenile idiopathic arthritis: results from the CAPRI Registry

Rheumatology (Oxford). 2022 Nov 28;61(12):4835-4844. doi: 10.1093/rheumatology/keac146.

Abstract

Objective: The aim of this study was to develop and validate a brief disability screen for children with JIA, the Kids Disability Screen (KDS).

Methods: A total of 216 children enrolled in the Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) Registry in 2017-2018 formed a development cohort, and 220 children enrolled in 2019-2020 formed a validation cohort. At every clinic visit, parents answered two questions derived from the Childhood Health Assessment Questionnaire (CHAQ): 'Is it hard for your child to run and play BECAUSE OF ARTHRITIS?' ('Hard' 0-10), and 'Does your child usually need help from you or another person BECAUSE OF ARTHRITIS?' ('Help', 0-10). We used 36-fold cross-validation and tested nine different mathematical methods to combine the answers and optimize psychometric properties. The results were confirmed in the validation cohort.

Results: Expressed as the mean of the two answers, KDS best balanced ease of use and psychometric properties, while a LASSO regression model combining the two answers with other patient characteristics [estimated CHAQ [eCHAQ]) had the highest responsiveness. In the validation cohort, 22.7%, 25.9% and 28.6% of patients had a score of 0 at enrolment for the KDS, eCHAQ and CHAQ, respectively. Responsiveness was 0.67, 0.74 and 0.62, respectively. Sensitivity to detect a CHAQ > 0 was 0.90 and specificity 0.56, KDS detecting some disability in 44% of children with a CHAQ = 0.

Conclusion: This simple KDS has psychometric properties comparable with those of a full CHAQ and may be used at every clinic visit to identify those children who need a full disability assessment.

Keywords: JIA; disability; function.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Arthritis, Juvenile* / diagnosis
  • Canada
  • Child
  • Cross-Cultural Comparison
  • Disability Evaluation
  • Health Status
  • Humans
  • Psychometrics
  • Quality of Life
  • Registries
  • Reproducibility of Results
  • Rheumatology*
  • Surveys and Questionnaires