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Published in: Indian Journal of Pediatrics 10/2010

01-10-2010 | Symposium on Pediatric Rheumatology-II

Outcome Measures in Pediatric Rheumatology

Authors: Sujata Sawhney, Manjari Agarwal

Published in: Indian Journal of Pediatrics | Issue 10/2010

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Abstract

Children with rheumatologic disorders need periodic systematic evaluation of their disease status so that all aspects of the child’s life that are affected can be adequately assessed. The commonest rheumatologic disease that afflicts children is Juvenile Idiopathic Arthritis (JIA). The child with JIA should have several domains assessed at regular intervals. These outcome measures include the physical, functional and the quality of life assessment measures. No single measure can capture the full impact of the disease on the child’s life. This article highlights the key outcome measures in a child with JIA and introduces the readers to several disease measurement tools that have been developed for assessment of outcome for the child with JIA.
Literature
1.
go back to reference Finster M, Wood M. The Apgar score has survived the test of time. Anesthesiology. 2005;102(4):855–7.CrossRefPubMed Finster M, Wood M. The Apgar score has survived the test of time. Anesthesiology. 2005;102(4):855–7.CrossRefPubMed
2.
go back to reference The International Expert Committee. International expert committee report on the role of the A1C assay in the diagnosis of diabetes. Diabetes Care. 2009;32(7):1327–34.CrossRef The International Expert Committee. International expert committee report on the role of the A1C assay in the diagnosis of diabetes. Diabetes Care. 2009;32(7):1327–34.CrossRef
3.
go back to reference Ringold S, Wallace CA. Measuring clinical response and remission in juvenile idiopathic arthritis. Curr Opin Rheumatol. 2007;19(5):471–6.CrossRefPubMed Ringold S, Wallace CA. Measuring clinical response and remission in juvenile idiopathic arthritis. Curr Opin Rheumatol. 2007;19(5):471–6.CrossRefPubMed
4.
go back to reference Duffy CM. Measurement of health status, functional status, and quality of life in children with juvenile idiopathic arthritis: clinical science for the pediatrician. Pediatr Clin North Am. 2005;52(2):359–72.CrossRefPubMed Duffy CM. Measurement of health status, functional status, and quality of life in children with juvenile idiopathic arthritis: clinical science for the pediatrician. Pediatr Clin North Am. 2005;52(2):359–72.CrossRefPubMed
5.
go back to reference Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. JAMA. 1994;272(8):619–26.CrossRefPubMed Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. JAMA. 1994;272(8):619–26.CrossRefPubMed
6.
go back to reference Giannini EH, Ruperto N, Ravelli A, Lovell DJ, Felson DT, Martini A. Preliminary definition of improvement in juvenile arthritis. Arthritis Rheum. 1997;40(7):1202–9.PubMed Giannini EH, Ruperto N, Ravelli A, Lovell DJ, Felson DT, Martini A. Preliminary definition of improvement in juvenile arthritis. Arthritis Rheum. 1997;40(7):1202–9.PubMed
7.
go back to reference Brunner HI, Lovell DJ, Finck BK, Giannini EH. Preliminary definition of disease flare in juvenile rheumatoid arthritis. J Rheumatol. 2002;29(5):1058–64.PubMed Brunner HI, Lovell DJ, Finck BK, Giannini EH. Preliminary definition of disease flare in juvenile rheumatoid arthritis. J Rheumatol. 2002;29(5):1058–64.PubMed
8.
go back to reference Wallace CA, Ruperto N, Giannini E, Childhood Arthritis and Rheumatology Research Alliance, Pediatric Rheumatology International Trials Organization, Pediatric Rheumatology Collaborative Study Group. Preliminary criteria for clinical remission for select categories of juvenile idiopathic arthritis. J Rheumatol. 2004;31(11):2290–4.PubMed Wallace CA, Ruperto N, Giannini E, Childhood Arthritis and Rheumatology Research Alliance, Pediatric Rheumatology International Trials Organization, Pediatric Rheumatology Collaborative Study Group. Preliminary criteria for clinical remission for select categories of juvenile idiopathic arthritis. J Rheumatol. 2004;31(11):2290–4.PubMed
9.
go back to reference Ringold S, Seidel KD, Koepsell TD, Wallace CA. Inactive disease in polyarticular juvenile idiopathic arthritis: current patterns and associations. Rheumatology. 2009;48(8):972–7.CrossRefPubMed Ringold S, Seidel KD, Koepsell TD, Wallace CA. Inactive disease in polyarticular juvenile idiopathic arthritis: current patterns and associations. Rheumatology. 2009;48(8):972–7.CrossRefPubMed
10.
go back to reference Lurati A, Salmaso A, Gerloni V, Gattinara M, Fantini F. Accuracy of Wallace criteria for clinical remission in juvenile idiopathic arthritis: a cohort study of 761 consecutive cases. J Rheumatol. 2009;36(7):1532–5.CrossRefPubMed Lurati A, Salmaso A, Gerloni V, Gattinara M, Fantini F. Accuracy of Wallace criteria for clinical remission in juvenile idiopathic arthritis: a cohort study of 761 consecutive cases. J Rheumatol. 2009;36(7):1532–5.CrossRefPubMed
11.
go back to reference Russo RA, Katsicas MM. Clinical remission in patients with systemic juvenile idiopathic arthritis treated with anti-tumor necrosis factor agents. J Rheumatol. 2009;36(5):1078–82.CrossRefPubMed Russo RA, Katsicas MM. Clinical remission in patients with systemic juvenile idiopathic arthritis treated with anti-tumor necrosis factor agents. J Rheumatol. 2009;36(5):1078–82.CrossRefPubMed
12.
go back to reference van der Heijde DM, van’t Hof M, van Riel PL, van de Putte LB. Development of a disease activity score based on judgment in clinical practice by rheumatologists. J Rheumatol. 1993;20:579–81.PubMed van der Heijde DM, van’t Hof M, van Riel PL, van de Putte LB. Development of a disease activity score based on judgment in clinical practice by rheumatologists. J Rheumatol. 1993;20:579–81.PubMed
13.
go back to reference Fransen J, van Riel PL. The disease activity score and the EULAR response criteria. Rheum Dis Clin North Am. 2009;35(4):745–57. vii–viii.CrossRefPubMed Fransen J, van Riel PL. The disease activity score and the EULAR response criteria. Rheum Dis Clin North Am. 2009;35(4):745–57. vii–viii.CrossRefPubMed
14.
go back to reference Goekoop-Ruiterman YP, de Vries-Bouwstra JK, Kerstens PJ, et al. DAS-driven therapy versus routine care in patients with recent-onset active rheumatoid arthritis. Ann Rheum Dis. 2010;69(1):65–9.CrossRefPubMed Goekoop-Ruiterman YP, de Vries-Bouwstra JK, Kerstens PJ, et al. DAS-driven therapy versus routine care in patients with recent-onset active rheumatoid arthritis. Ann Rheum Dis. 2010;69(1):65–9.CrossRefPubMed
15.
go back to reference Consolaro A, Ruperto N, Bazso A, et al. Pediatric Rheumatology International Trials Organisation. Development and validation of a composite disease activity score for juvenile idiopathic arthritis. Arthritis Rheum. 2009;15;61(5):658–66.CrossRef Consolaro A, Ruperto N, Bazso A, et al. Pediatric Rheumatology International Trials Organisation. Development and validation of a composite disease activity score for juvenile idiopathic arthritis. Arthritis Rheum. 2009;15;61(5):658–66.CrossRef
16.
go back to reference Viola S, Felici E, Magni-Manzoni S, et al. Development and validation of a clinical index for assessment of long-term damage in juvenile idiopathic arthritis. Arthritis Rheum. 2005;52(7):2092–102.CrossRefPubMed Viola S, Felici E, Magni-Manzoni S, et al. Development and validation of a clinical index for assessment of long-term damage in juvenile idiopathic arthritis. Arthritis Rheum. 2005;52(7):2092–102.CrossRefPubMed
17.
go back to reference Sarma PK, Misra R, Aggarwal A. Outcome in patients with enthesitis related arthritis (ERA): juvenile arthritis damage index (JADI) and functional status. Pediatr Rheumatol Online J. 2008;6:18.CrossRefPubMed Sarma PK, Misra R, Aggarwal A. Outcome in patients with enthesitis related arthritis (ERA): juvenile arthritis damage index (JADI) and functional status. Pediatr Rheumatol Online J. 2008;6:18.CrossRefPubMed
18.
go back to reference Poznanski AK, Hernandez RJ, Guire KE, Bereza U, Garn SM. Carpal length in children: a useful measurement in the diagnosis of rheumatoid arthritis and some congenital malformation syndromes. Radiology. 1978;129:661–8.PubMed Poznanski AK, Hernandez RJ, Guire KE, Bereza U, Garn SM. Carpal length in children: a useful measurement in the diagnosis of rheumatoid arthritis and some congenital malformation syndromes. Radiology. 1978;129:661–8.PubMed
19.
go back to reference Magni-Manzoni S, Rossi F, Pistorio A, et al. Prognostic factors for radiographic progression, radiographic damage, and disability in juvenile idiopathic arthritis. Arthritis Rheum. 2003;48:3509–17.CrossRefPubMed Magni-Manzoni S, Rossi F, Pistorio A, et al. Prognostic factors for radiographic progression, radiographic damage, and disability in juvenile idiopathic arthritis. Arthritis Rheum. 2003;48:3509–17.CrossRefPubMed
20.
go back to reference Van Rossum MA, Boers M, Zwinderman AH, et al. Dutch Juvenile Idiopathic Arthritis Study Group. Development of a standardized method of assessment of radiographs and radiographic change in juvenile idiopathic arthritis: introduction of the Dijkstra composite score. Arthritis Rheum. 2005;52(9):2865–72.CrossRefPubMed Van Rossum MA, Boers M, Zwinderman AH, et al. Dutch Juvenile Idiopathic Arthritis Study Group. Development of a standardized method of assessment of radiographs and radiographic change in juvenile idiopathic arthritis: introduction of the Dijkstra composite score. Arthritis Rheum. 2005;52(9):2865–72.CrossRefPubMed
21.
go back to reference Rossi F, Di Dia F, Galipò O, et al. Use of the Sharp and Larsen scoring methods in the assessment of radiographic progression in juvenile idiopathic arthritis. Arthritis Rheum. 2006;15; 55(5):717–23.CrossRef Rossi F, Di Dia F, Galipò O, et al. Use of the Sharp and Larsen scoring methods in the assessment of radiographic progression in juvenile idiopathic arthritis. Arthritis Rheum. 2006;15; 55(5):717–23.CrossRef
22.
go back to reference Bertamino M, Rossi F, Pistorio A, et al. Development and initial validation of a radiographic scoring system for the hip in juvenile idiopathic arthritis. J Rheumatol. 2010;37(2):432–9.CrossRefPubMed Bertamino M, Rossi F, Pistorio A, et al. Development and initial validation of a radiographic scoring system for the hip in juvenile idiopathic arthritis. J Rheumatol. 2010;37(2):432–9.CrossRefPubMed
23.
go back to reference Malattia C, Damasio MB, Magnaguagno F, et al. Magnetic resonance imaging, ultrasonography, and conventional radiography in the assessment of bone erosions in juvenile idiopathic arthritis. Arthritis Rheum. 2008;59(12):1764–72.CrossRefPubMed Malattia C, Damasio MB, Magnaguagno F, et al. Magnetic resonance imaging, ultrasonography, and conventional radiography in the assessment of bone erosions in juvenile idiopathic arthritis. Arthritis Rheum. 2008;59(12):1764–72.CrossRefPubMed
24.
go back to reference Olech E, Crues 3rd JV, Yocum DE, Merrill JT. Bone marrow edema is the most specific finding for rheumatoid arthritis (RA) on noncontrast magnetic resonance imaging of the hands and wrists: a comparison of patients with RA and healthy controls. J Rheumatol. 2010;37(2):265–74.CrossRefPubMed Olech E, Crues 3rd JV, Yocum DE, Merrill JT. Bone marrow edema is the most specific finding for rheumatoid arthritis (RA) on noncontrast magnetic resonance imaging of the hands and wrists: a comparison of patients with RA and healthy controls. J Rheumatol. 2010;37(2):265–74.CrossRefPubMed
25.
go back to reference Singh G, Athreya BH, Fries JF, Goldsmith DP. Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum. 1994;37(12):1761–9.CrossRefPubMed Singh G, Athreya BH, Fries JF, Goldsmith DP. Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum. 1994;37(12):1761–9.CrossRefPubMed
26.
go back to reference Dempster H, Porepa M, Young N, Feldman BM. The clinical meaning of functional outcome scores in children with juvenile arthritis. Arthritis Rheum. 2001;4(8):1768–74.CrossRef Dempster H, Porepa M, Young N, Feldman BM. The clinical meaning of functional outcome scores in children with juvenile arthritis. Arthritis Rheum. 2001;4(8):1768–74.CrossRef
27.
go back to reference Lovell DJ, Howe S, Shear E, et al. Development of a disability measurement tool for juvenile rheumatoid arthritis. The Juvenile Arthritis Functional Assessment Scale. Arthritis Rheum. 1989;32(11):1390–5.CrossRefPubMed Lovell DJ, Howe S, Shear E, et al. Development of a disability measurement tool for juvenile rheumatoid arthritis. The Juvenile Arthritis Functional Assessment Scale. Arthritis Rheum. 1989;32(11):1390–5.CrossRefPubMed
28.
go back to reference Howe S, Levinson J, Shear E, 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;34(7):873–80.CrossRefPubMed Howe S, Levinson J, Shear E, 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;34(7):873–80.CrossRefPubMed
29.
go back to reference Landgraf JM, Abetz L, Ware JE. In the CHQ user’s manual. 1st ed. Boston: The Health Institute, New England Medical Center; 1996. Landgraf JM, Abetz L, Ware JE. In the CHQ user’s manual. 1st ed. Boston: The Health Institute, New England Medical Center; 1996.
30.
go back to reference Oliveira S, Ravelli A, Pistorio A, et al. The Pediatric Rheumatology International Trials Organization (PRINTO). Proxy reported health related quality of life of patients with juvenile idiopathic arthritis: the pediatric rheumatology international trials organization quality of life cohort study. Arthritis Rheum. 2007;57:35–43.CrossRefPubMed Oliveira S, Ravelli A, Pistorio A, et al. The Pediatric Rheumatology International Trials Organization (PRINTO). Proxy reported health related quality of life of patients with juvenile idiopathic arthritis: the pediatric rheumatology international trials organization quality of life cohort study. Arthritis Rheum. 2007;57:35–43.CrossRefPubMed
31.
go back to reference Prince FH, Geerdink LM, Borsboom GJ, et al. Major improvements in health-related quality of life during the use of etanercept in patients with previously refractory juvenile idiopathic arthritis. Ann Rheum Dis. 2010;69(1):138–42.CrossRefPubMed Prince FH, Geerdink LM, Borsboom GJ, et al. Major improvements in health-related quality of life during the use of etanercept in patients with previously refractory juvenile idiopathic arthritis. Ann Rheum Dis. 2010;69(1):138–42.CrossRefPubMed
32.
go back to reference Duffy CM, Arsenault L, Duffy KNW, 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;24:738–46.PubMed Duffy CM, Arsenault L, Duffy KNW, 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;24:738–46.PubMed
33.
go back to reference Varni JW, Seid M, Rode CA. The Peds QL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37:126–39.CrossRefPubMed Varni JW, Seid M, Rode CA. The Peds QL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37:126–39.CrossRefPubMed
34.
go back to reference Allaire SH, DeNardo BS, Szer IS, Meenan RF, Schaller JG. The economic impacts of juvenile rheumatoid arthritis. J Rheumatol. 1992;19(6):952–5.PubMed Allaire SH, DeNardo BS, Szer IS, Meenan RF, Schaller JG. The economic impacts of juvenile rheumatoid arthritis. J Rheumatol. 1992;19(6):952–5.PubMed
35.
go back to reference Minden K, Niewerth M, Listing J, et al. The economic burden of juvenile idiopathic arthritis-results from the German pediatric rheumatologic database. Clin Exp Rheumatol. 2009;27(5):863–9.PubMed Minden K, Niewerth M, Listing J, et al. The economic burden of juvenile idiopathic arthritis-results from the German pediatric rheumatologic database. Clin Exp Rheumatol. 2009;27(5):863–9.PubMed
36.
go back to reference Thornton J, Lunt M, Ashcroft DM, et al. Costing juvenile idiopathic arthritis: examining patient-based costs during the first year after diagnosis. Rheumatology. 2008;47(7):985–90.CrossRefPubMed Thornton J, Lunt M, Ashcroft DM, et al. Costing juvenile idiopathic arthritis: examining patient-based costs during the first year after diagnosis. Rheumatology. 2008;47(7):985–90.CrossRefPubMed
37.
go back to reference Haapasaari J, Kautiainen HJ, Isomäki HA, Hakala M. Etanercept does not essentially increase the total costs of the treatment of refractory juvenile idiopathic arthritis. J Rheumatol. 2004;31(11):2286–9.PubMed Haapasaari J, Kautiainen HJ, Isomäki HA, Hakala M. Etanercept does not essentially increase the total costs of the treatment of refractory juvenile idiopathic arthritis. J Rheumatol. 2004;31(11):2286–9.PubMed
Metadata
Title
Outcome Measures in Pediatric Rheumatology
Authors
Sujata Sawhney
Manjari Agarwal
Publication date
01-10-2010
Publisher
Springer-Verlag
Published in
Indian Journal of Pediatrics / Issue 10/2010
Print ISSN: 0019-5456
Electronic ISSN: 0973-7693
DOI
https://doi.org/10.1007/s12098-010-0208-9

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