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Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience

Laura E Lunt1,2, Stephanie Shoop-Worrall1,3, Nicola Smith4

  • 1Versus Arthritis Centre for Epidemiology, Centre for Musculoskeletal Research, The University of Manchester, Manchester, UK.

Pediatric Rheumatology Online Journal
|November 20, 2020
PubMed

Insights

Patient-reported outcome and experience measures (PROM/PREM) for juvenile idiopathic arthritis (JIA) are validated and feasible for UK clinical use. Routine collection can improve patient-centered care quality for children with JIA.

Area of Science:

  • Paediatric Rheumatology
  • Health Outcomes Research
  • Patient-Reported Measures

Background:

  • Measuring outcomes important to children and young people (CYP) with juvenile idiopathic arthritis (JIA) is crucial for patient-centered care improvements.
  • This study validates novel JIA patient-reported outcome and experience measures (PROM and PREM) from the CAPTURE-JIA project across two UK centres.

Purpose of the Study:

  • To validate the CAPTURE-JIA Patient-Reported Outcome Measure (PROM) and Patient-Reported Experience Measure (PREM) for children and young people with JIA.
  • To assess the truth, discrimination, and feasibility of the newly developed measures.

Main Methods:

  • Recruited CYP with JIA from paediatric rheumatology clinics, administering CAPTURE-JIA PROM/PREM, CHAQ, and CHU 9D.
  • Conducted cognitive interviews and test-retest reliability assessments for PROM/PREM.
  • Applied OMERACT filter criteria, assessing truth (cognitive interviewing, sensitivity analysis, correlations) and discrimination (specificity, reliability).

Main Results:

  • Eighty-two CYP participated; PROM/PREM were understood and covered important areas.
  • PROM showed high sensitivities (>70%) against CHU 9D items (except fatigue) and moderate to very strong correlations (0.40-0.82).
  • High specificities (>70%) were observed for PROM/PREM domains; feasibility was confirmed with short completion times (PROM: 60s, PREM: 49s).

Conclusions:

  • The CAPTURE-JIA PROM and PREM are valid and feasible for use in UK paediatric rheumatology settings.
  • Routine implementation of these measures can significantly enhance the quality of care for children with JIA.
Abstract

Keywords:
Juvenile idiopathic arthritisOMERACTPatient-reported outcomesQuality of careValidation

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