Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

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construct validity in both cross-sectional and longitudinal samples by yielding strong
correlations with the JADAS [ 19 ] and fair correlations with JIA outcome measures
not included in the indices. Furthermore, they exhibited good construct validity, dis-
criminant validity, responsiveness to clinical change, and reliability in a large patient
population.


Summary and Conclusions

In spite of their popularity and widespread use, most of the instruments used to
assess PCROs have remained essentially research tools and are not routinely admin-
istered in most pediatric rheumatology centers. One of the reasons that may explain
why these evaluations are uncommonly performed in daily clinical care is the length
and complexity of some questionnaires, particularly those used for the assessment
of physical function and HRQOL. Therefore, there is the concern that their regular
administration may interfere with offi ce routine and time management, with conse-
quent increased costs and time.
Research in the fi eld should therefore aim to simplify the assessment in order to
facilitate the widespread use in routine clinical practice while maintaining the sci-
entifi c integrity of the tools.


References


  1. Ravelli A, Martini A. Juvenile idiopathic arthritis. Lancet. 2007;369:767–78.

  2. Petty RE, Southwood TR, Manners P, Baum J, Glass DN, Goldenberg J, et al. International
    League of Associations for Rheumatology classifi cation of juvenile idiopathic arthritis: second
    revision, Edmonton, 2001. J Rheumatol. 2004;31:390–2.

  3. Foster HE, Marshall N, Myers A, Dunkley P, Griffi ths ID. Outcome in adults with juvenile
    idiopathic arthritis—a quality of life study. Arthritis Rheum. 2003;48:767–75.

  4. Ruperto N, Ravelli A, Levinson JE, Shear ES, Murray K, Tague BL, et al. Longterm health
    outcomes and quality of life in American and Italian inception cohorts of patients with juvenile
    rheumatoid arthritis. II. Early predictors of outcome. J Rheumatol. 1997;24:952–8.

  5. Strand CV, Russell AS. WHO/ILAR taskforce on quality of life. J Rheumatol.
    1997;24:1630–3.

  6. Garcia-Munitis P, Bandeira M, Pistorio A, Magni-Manzoni S, Ruperto N, Schivo A, et al.
    Level of agreement between children, parents, and physicians in rating pain intensity in juve-
    nile idiopathic arthritis. Arthritis Rheum. 2006;55:177–83.

  7. Consolaro A, Vitale R, Pistorio A, Lattanzi B, Ruperto N, Malattia C, et al. Physicians' and
    parents' ratings of inactive disease are frequently discordant in juvenile idiopathic arthritis.
    J Rheumatol. 2007;34:1773–6.

  8. Barton JL, Imboden J, Graf J, Glidden D, Yelin EH, Schillinger D. Patient-physician discor-
    dance in assessments of global disease severity in rheumatoid arthritis. Arthritis Care Res
    (Hoboken). 2010;62:857–64.

  9. Luca N, Feldman BM. Pediatric rheumatology: improving the assessment of children with
    JIA. Nat Rev Rheumatol. 2011;7:442–4.


A. Consolaro et al.
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