Measurement of Health Status, Functional Status, and Quality of Life in Children with Juvenile Idiopathic Arthritis: Clinical Science for the Pediatrician

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Process of outcome measure development

Although the processes of developing and validating outcome measures have been well established [10], [11], a short discussion is necessary because the approach is unfamiliar to most pediatricians. In setting out to develop a measure, one must clearly understand the precise purpose of the measurement. There are many compendia of measures, and it is incumbent upon the investigator to review what measures are available before pursuing the laborious task of developing a new one. One may be

Outcome measures in use in juvenile idiopathic arthritis

Over the past 15 years, a number of JIA-specific measures of functional status and HRQoL have been developed (Box 2).

Additionally, several generic measures have been modified for use in JIA. A complete description of these various measures can be found in the original publications. Here, examples of each type of measure are discussed, and the advantages and disadvantages of various measures are highlighted (Table 1).

Remission rates

Prior studies of remission rates in JIA [24], [25], [26], [27], [28], which have recently been reviewed comprehensively [49], [50], have used a variety of definitions of remission and disease flare, resulting in considerable variation in reported remission rates. This variation makes definitive interpretation of the studies difficult. Overall, these studies suggest that JIA is not a benign disease, that it frequently continues into adulthood, and that most remissions occur in the first 5 years

Summary

There has been a tremendous emphasis on the development of measures of function and HRQoL for application in JIA over the past 15 years. Of the measures that are currently available, the CHAQ and the CHQ are the most widely used, although the use of others, including the JAQQ, the Peds QL, and the QoMLQ, is growing. As evidence emerges from better longitudinal studies with these measures, it will be possible to describe patient outcomes in JIA more accurately.

From the outcome studies that have

Acknowledgments

Dr. Duffy is recipient of the Sessenwein Award for research, McGill University.

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References (58)

  • B. Kirshner et al.

    A methodologic framework for assessing health indices

    J Chron Dis

    (1985)
  • K. Oen

    Long-term outcomes and predictors of outcomes for patients with juvenile idiopathic arthritis

    Best Pract Res Clin Rheumatol

    (2002)
  • R.E. Petty et al.

    International League of Associations of Rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001

    J Rheumatol

    (2004)
  • E.H. Giannini et al.

    Preliminary definition of improvement in juvenile arthritis

    Arthritis Rheum

    (1997)
  • J.J. Miller

    Psychosocial factors related to rheumatic diseases in childhood

    J Rheumatol

    (1993)
  • S.H. Allaire et al.

    The economic impact of juvenile chronic arthritis

    J Rheumatol

    (1992)
  • T.M. Gill et al.

    A critical appraisal of the quality of quality of life measurements

    JAMA

    (1994)
  • G.H. Guyatt et al.

    Measuring quality of life in clinical trials: a taxonomy and review

    Can Med Assoc J

    (1989)
  • C.M. Duffy et al.

    Health assessment in the rheumatic diseases of childhood

    Curr Opin Rheumatol

    (1997)
  • C.M. Duffy et al.

    Outcome assessment in paediatric rheumatic diseases

  • K.J. Murray et al.

    Functional measures in children with rheumatic diseases

    Pediatr Clin North Am

    (1995)
  • D.K. Streiner et al.

    Health measurement scales: a practical guide to their development and use

    (1989)
  • F.V. Wright et al.

    Development of a self-report functional status index for juvenile rheumatoid arthritis

    J Rheumatol

    (1994)
  • C.M. Duffy et al.

    The juvenile arthritis quality of life questionnaire—development of a new responsive index for juvenile rheumatoid arthritis and juvenile spondyloarthritides

    J Rheumatol

    (1997)
  • C.J. Coulton et al.

    Assessment of the reliability and validity of the arthritis impact measurement scales for children with juvenile arthritis

    Arthritis Rheum

    (1987)
  • D.J. Lovell et al.

    Development of a disability measurement tool for juvenile rheumatoid arthritis. The Juvenile Arthritis Functional Assessment Scale

    Arthritis Rheum

    (1989)
  • S. Howe et al.

    Development of a disability measurement tool for juvenile rheumatoid arthritis. The Juvenile Arthritis Functional Assessment Report for children and their parents

    Arthritis Rheum

    (1991)
  • G. Singh et al.

    Measurement of health status in children with juvenile rheumatoid arthritis

    Arthritis Rheum

    (1994)
  • F.V. Wright et al.

    The juvenile arthritis functional status index (JASI): a validation study

    J Rheumatol

    (1996)
  • C.M. Duffy et al.

    Level of agreement between parents and children in rating dysfunction in juvenile rheumatoid arthritis and juvenile spondyloarthritides

    J Rheumatol

    (1993)
  • L.B. Tucker et al.

    The childhood arthritis health profile: correlation of JRA-specific scales with disease severity and activity

    Arthritis Rheum

    (1996)
  • J.M. Landgraf et al.

    Child Health Questinnaire (CHQ): a user's manual

    (1996)
  • J.W. Varni et al.

    The Peds QL: measurement model for the Pediatric Quality of Life Inventory

    Med Care

    (1999)
  • B.M. Feldman et al.

    Distinction of quality of life, health-related quality of life, and health status in children referred for rheumatology care

    J Rheumatol

    (2000)
  • K. Minden et al.

    Prognosis of patients with juvenile chronic arthritis and juvenile spondyloarthropathy

    J Rheumatol

    (2000)
  • L.R. Spiegel et al.

    Early predictors of poor functional outcome in systemic onset juvenile rheumatoid arthritis: a multicentre cohort study

    Arthritis Rheum

    (2000)
  • K. Oen et al.

    Disease course and outcome of juvenile rheumatoid arthritis in a multicentre cohort

    J Rheumatol

    (2002)
  • F. Fantini et al.

    Remission in juvenile chronic arthritis: a cohort study of 683 consecutive cases with a mean 10 year follow up

    J Rheumatol

    (2003)
  • B. Flato et al.

    Prognostic factors in juvenile rheumatoid arthritis: a case-control study revealing early predictors and outcome after 14.9 years

    J Rheumatol

    (2003)
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      The concept of quality of life has been defined by the World Health Organization as “an individual's perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns” [36]. JIA is a chronic, in some cases multisystem, inflammatory condition that may influence many aspects of a child's life, including not only the physical but also the social, emotional, intellectual, and economic aspects [37]. Therefore, a complete assessment of children with JIA requires an understanding of the impact of the disease, its complications, and its treatment on a child's life.

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