Abstract
Aiming to review the currently available generic and disease specific measures of Health Related Quality of Life and to make recommendations of the future developments of two validated tools, we report the summary of the development steps for cross-cultural adaptation, validation and the clinical utility of the brazilian version of the generic Child Health Questionnaire - CHQ PF 50® and the disease specific Child Health Assessment Questionnaire - CHAQ, for parents of children and adolescents with chronic arthritis across a broad age range, from 5-19 years. These instruments provide combined assessments of health or functional status as well a physical and psychosocial dimension of quality of life and have shown cultural appropriateness with good psychometric properties, being now recommended for clinical trials or daily practice in Paediatric Rheumatology.

Key words
Artrites crônicas, avaliação funcional, qualidade de vida

Bibliografía del artículo

1. The WHOQOL Group The World Health Organization Quality of Life Assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995, 41:1403-9.
2. Jenney MEM, Campbell S: Measuring quality of life. Arch Dis Child, 1997; 77:347-54.
3. Burgos-Vargas R Assessment of quality of life in children with rheumatic disease. J Rheumatol 1999; 26: 1432-4.
4. Tucker LB Whose life is it anyway Understanding quality of life in children with rheumatic diseases. J Rheumatol 2000; 27: 8-11.
5. Ruperto N, Martini A for PRINTO (Ed) Quality of life in juvenile idiopathic arthritis patients compared to healthy children. Clin Exp. Rheum Suppl, 2001:19, Suppl 23.
6. Petty RE, Southwood TR, Baum J et al: Revision of the proposed classification criteria for juvenile idiopathic arthritis. Durban 1997. J Rheumatol 1998; 25:1991-4.
7. Wallace CA, Levinson JE: Juvenile rheumatoid arthritis: outcome and treatment for the 1990s. Rheum Dis Clin North Am, 1991; 17:891- 905.
8. Ruperto N, Levinson JE, Ravelli A, Shear ES, Tague L, Murray K, Martini A, Giannini EH: Longterm Health Outcomes and Quality of Life in American and Italian Inception Cohorts of Patients with Juvenile Rheumatoid Arthritis. I. Outcome Status. J Rheumatol, 1997,24:(5) 945-51.
9. Ruperto N, Levinson JE, Ravelli A, Shear ES, Tague L, Murray K, Martini A, Giannini EH: 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:(5) 952-8.
10. Fries JF, Spitz P, Kraines RG, Holman HR Measurement of patient outcome in arthritis. Arthritis Rheum 1980; 23:137-45.
11. Timko C, Stovel KW, Moos RH, Miller JJ III Adaptation to juvenile rheumatic diseases. A controlled evaluation of functional disability with a one-year follow up. Health Psychology 1992; 11: 67-76.
12. 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.
13. Len C, Goldenberg J, Ferraz MB, Hilario MO, Oliveira LM, Sacchetti S: Crosscultural reability of the Childhood Health Assessment Questionnaire. J Rheumatol, 1994; 21(12): 2349- 52.
14. Melo-Gomes JA, Ruperto N, Canhão H et al. for the Pediatric Rheumatology International Trials Organisation (PRINTO) The Portuguese version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ). Clin Exp Rheumatol 2001; 19 (Suppl 23): S 126 -S130.
15. Machado CSM, Ruperto N, Silva CHM et al. for the Paediatric Rheumatology International Trials Organisation (PRINTO) The Brazilian version of the "Childhood Health Assessment Questionnaire - CHAQ" and the "Child Health Questionnaire - CHQ" Clin Exp Rheum (Suppl 23), 19 (4): S25-30, 2001.
16. Ware JE Jr, Sherbourne CD The MOS 33-item short-form health survey (SF-36) Conceptual framework and item selection. Med Care 1992, 30: 473-83.
17. Landgraf JM, Albertz L, Ware JE Jr (Editors) The Child Health Questionnaire: A user\'s manual. Boston, The Health Act, 1999.
18. Guillemin F, Bombardier C, Beaton D: Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol, 1993; 46:1417-32.
19. Ferraz MB: Cross cultural adaptation of questionnaires: what is it and when should it be performed. J Rheumatol, 1997; 24(11):2066-8.
20. Giannini EH, Ruperto N, Ravelli A, Lovell DJ, Martini A for the Pediatric Rheumatology International trials organization. Preliminary definition of improvement in juvenile arthrits . Arthritis Rheum, 1997; 40 (7): 1202-9.
21. Ruperto N, Ravelli A, Falcini F, et al. Responsiveness of outcome measures in juvenile chronic arthritis. Rheumatology 1999; 38: 176-80.
22. Ruperto N, Ravelli A, Migliavacca D, Viola S, Pistorio A, Duarte C, Martini A Responsiveness of clinical measures in children with oligoarticular juvenile chronic arthritis. J Rheumatol 1999, 26: 1827-30.
23. Dempster H, Porepa M, Young N, Feldman BM The clinical meaning of functional outcome scores in children with Juvenile Arthritis. Arthritis Rheum 2001; 44: 1766-74.
24. Brasil TB, Ferriani VPL, Machado CSM Inquérito sobre a Qualidade de Vida Relacionada À Saúde em crianças e adolescentes portadores de Artrites Idiopáticas Juvenis (AIJ). J Pediatr 2003 (no prelo)