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Comparison between Children with Juvenile Idiopathic Arthritis (JIA) and their Parents Concerning Perceived Quality of Life

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Abstract

The aim of the study was to determine the level of agreement between the perceptions of children with JIA and their parents concerning quality of life. Fifty patients aged 9–18 years and their parents, who attended the JIA clinic at the Montreal Children’s Hospital, completed the Juvenile Arthritis Quality of Life Questionnaire (JAQQ). Paired t-tests were employed to compare parents’ and children’s scores and agreements were analyzed by intraclass correlation coefficients (ICCs). Linear regression was used to explore factors associated with agreements and with the perceptions of quality of life. ICCs (95% confidence interval) for the subscales of the JAQQ were 0.62 (0.42,0.77) for gross motor function, 0.35 (0.08,0.57) for fine motor function, 0.61 (0.41,0.76) for psychosocial function, 0.70 (0.52,0.82) for systemic symptoms and 0.60 (0.38,0.75) for pain. Agreement was higher for psychosocial function among younger children and for overall quality of life among those who had the disease longer. Higher agreement levels on pain were associated with more severe disease. Disease severity was associated with perceptions of quality of life (p < 0.01). There seems to be good agreement between the perceptions of children with JIA and their parents concerning quality of life, except for fine motor function.

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Abbreviations

AJC:

Active joint count

CHAQ:

Child Health Assessment Questionnaire

ICC:

Intraclass correlation coefficient

JAFAR:

Juvenile Arthritis Functional Assessment Report

JAQQ:

Juvenile Arthritis Quality of life Questionnaire

JIA:

Juvenile idiopathic arthritis

JRA:

Juvenile rheumatoid arthritis

SD:

Standard deviation

SJSS:

Sum of joint severity score

VAS:

Visual analog scale

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Authors and Affiliations

  1. École de Réadaptation, Université de Montréal, C.P. 6128, Succ. Centre-ville, Montreal, Quebec, H3C 3J7, Canada

    Karine Toupin April

  2. École de Réadaptation, Université de Montréal and Montreal Children’s Hospital of the McGill University Health Centre, C.P. 6128, Succ. Centre-ville, Montreal, Quebec, H3C 3J7, Canada

    Debbie Ehrmann Feldman

  3. Division of Clinical Epidemiology, Departments of Paediatrics and Epidemiology, Montreal Children’s Hospital of the McGill University Health Centre and Biostatistics McGill University, Canada

    Robert W. Platt

  4. Division of Rheumatology, Department of Paediatrics, Montreal Children’s Hospital of the McGill University Health Centre and McGill University, Canada

    Ciarán M. Duffy

Authors
  1. Karine Toupin April
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  2. Debbie Ehrmann Feldman
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  3. Robert W. Platt
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  4. Ciarán M. Duffy
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Corresponding authors

Correspondence to Karine Toupin April or Debbie Ehrmann Feldman.

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April, K.T., Feldman, D.E., Platt, R.W. et al. Comparison between Children with Juvenile Idiopathic Arthritis (JIA) and their Parents Concerning Perceived Quality of Life. Qual Life Res 15, 655–661 (2006). https://doi.org/10.1007/s11136-005-3690-1

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