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Development and initial validation of composite parent- and child-centered disease assessment indices for juvenile

Alessandro Consolaro1, Nicolino Ruperto, Angela Pistorio

  • 1Istituto di Ricovero e Cura a Carattere Scientifico G. Gaslini, Genoa, Italy.

Arthritis Care & Research
|May 28, 2011
PubMed

Insights

New parent and child assessment tools for juvenile idiopathic arthritis (JIA), the JAPAI and JACAI, show strong validity and reliability. These indices can effectively assess disease status in JIA patients.

Area of Science:

  • Pediatric Rheumatology
  • Clinical Assessment Tools
  • Patient-Reported Outcomes

Background:

  • Juvenile idiopathic arthritis (JIA) requires reliable disease assessment tools.
  • Current physician-centered assessments may not fully capture the child's or parent's perspective.
  • Developing patient-centered indices is crucial for comprehensive JIA management.

Purpose of the Study:

  • To develop and validate the Juvenile Arthritis Parent Assessment Index (JAPAI) and the Juvenile Arthritis Child Assessment Index (JACAI).
  • These indices aim to provide parent-centered and child-centered composite disease assessments for JIA.
  • To evaluate the psychometric properties of 4-item and 3-item versions of these indices.

Main Methods:

  • Validation involved nearly 5,000 JIA patients.
  • Construct validity, discriminant validity, responsiveness, and reliability were assessed.
  • Analyses included parent/child ratings of well-being, pain, physical function, and HRQOL.

Main Results:

  • JAPAI and JACAI demonstrated good construct validity, correlating well with established JIA measures.
  • Both indices effectively discriminated between disease states and patient groups.
  • Internal consistency was satisfactory (Cronbach's alpha >0.80), and responsiveness to change was fair.

Conclusions:

  • The JAPAI and JACAI are valid and reliable instruments for assessing JIA disease status.
  • These indices serve as suitable surrogates for physician evaluations.
  • Both JAPAI and JACAI are applicable in clinical practice, observational studies, and therapeutic trials.
Abstract

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