Validity and reliability of four parent/patient reported outcome measures for juvenile idiopathic arthritis remote monitoring

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  • E H Pieter van Dijkhuizen, IRCCS Istituto Giannina Gaslini - Genova
  • ,
  • Francesca Ridella, Department of Experimental Medicine, University of Genova, Genova
  • ,
  • Roberta Naddei, IRCCS Istituto Giannina Gaslini - Genova
  • ,
  • Chiara Trincianti, Department of Experimental Medicine, University of Genova, Genova
  • ,
  • Ilia Avrusin, IRCCS Istituto Giannina Gaslini - Genova
  • ,
  • Marta Mazzoni, Department of Experimental Medicine, University of Genova, Genova
  • ,
  • Diana Sutera, IRCCS Istituto Giannina Gaslini - Genova
  • ,
  • Nuray Aktay Ayaz, Kanuni Sultan Süleyman Education and Research Hospital
  • ,
  • Inmaculada Calvo Penades, Pediatric Oncology Unit, Hospital Universitario y Politecnico La Fe, Valencia, Spain.
  • ,
  • Tamas Constantin, Semmelweis Univ, Semmelweis University, Heart & Vasc Ctr
  • ,
  • Troels Herlin
  • Sheila K Oliveira, Univ Fed Rio de Janeiro, Universidade Federal do Rio de Janeiro, Universidade Federal do Rio de Janeiro, Museu Nacl
  • ,
  • Marite Rygg, Norwegian University of Science and Technology
  • ,
  • Helga Sanner, University of Oslo
  • ,
  • Gordana Susic, Division of Pediatric Rheumatology, Institute of Rheumatology of Belgrade, Belgrade, Serbia.
  • ,
  • Flavio Sztajnbok, Hospital Universitario Pedro Ernesto
  • ,
  • Boriana Varbanova, Medical University of Varna
  • ,
  • Nicolino Ruperto, IRCCS Istituto Giannina Gaslini - Genova
  • ,
  • Angelo Ravelli, IRCCS Istituto Giannina Gaslini - Genova
  • ,
  • Alessandro Consolaro, IRCCS Istituto Giannina Gaslini - Genova

OBJECTIVE: Aim of this work is to provide evidence of validity and reliability for four parent/child reported outcomes (PCROs) measures included in the OMERACT JIA core domain set: the evaluation of the child's pain and level of disease activity, the assessment of the morning stiffness (MS) duration, and an active joint count for proxy/self-assessment.

METHODS: Patients were included in the multinational study Epidemiology Treatment and Outcome of Childhood Arthritis. Criterion validity was assessed by examining the correlation of the four tested measures with physician measures and the clinical Juvenile Arthritis Disease Activity Score (cJADAS)10 in the whole sample and after grouping patients by ILAR category, geographic area, and education level. Reliability was assessed comparing two visits 7-14 days apart with intraclass correlation coefficients (ICC).

RESULTS: A total of 8,848 parents and 6,204 patients had all the evaluations available. Correlations of tested measures were moderate (0.4-0-7) with physician reported measures. The level of correlation with the cJADAS10 remained stable after grouping patients by ILAR category, geographic areas, and level of education of the parent filling the questionnaire. In 442 parents and 344 children, ICC ranged between 0.79 and 0.87 for parents and 0.81 and 0.88 for children.

CONCLUSION: The four tested PCROs showed good criterion validity and excellent reliability. These tools can be considered for remote patient assessment, when in person evaluation might not be possible.

Original languageEnglish
JournalArthritis Care & Research
ISSN2151-464X
DOIs
Publication statusE-pub ahead of print - 10 Jan 2022

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