Assessment of health status, function, and quality of life outcomes: Methodology and instruments

Textbook of Pediatric Rheumatology

Volumn , Issue , 2005, Pages 174-183

  Duffy, Ciarán M ^a   Lovell, Daniel J ^b,c  

^a MONTREAL CHILDREN S HOSPITAL   (Canada)

^b UNIVERSITY OF CINCINNATI COLLEGE OF MEDICINE   (United States)

^c CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 42049104067     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1016/B978-1-4160-0246-8.50013-9     Document Type: Chapter

References (118)

1. Ross CK, Lavigne JV, Hayford JR, et al. Psychological factors affecting reported pain in juvenile rheumatoid arthritis. J Pediatr Psychol 1989, 18:561.
2. Miller JJ Psychosocial factors related to rheumatic diseases in childhood. J Rheumatol 1993, 20:1.
3. Allaire SH, DeNardo BS, Szer IS, et al. The economic impact of juvenile chronic arthritis. J Rheumatol 1992, 19:1952.
4. Timko C, Baumgartner M, Moos RH, et al. Parenteral risk and resistance factors among children with juvenile rheumatic disease: a four-year predictive study. J Behav Med 1993, 16:571.
5. Carr AJ, Thompson PW, Kirwan FR Quality of life measures. Br J Rheumatol 1996, 35:275.
6. Bell MJ, Bombardier C, Tugwell P Measurement of functional status, quality of life, and utility in rheumatoid arthritis. Arthritis Rheum 1990, 33:591.
7. Kaplan RM, Coons SJ, Anderson JP Quality of life and policy analysis in arthritis. Arthritis Care Res 1992, 5:173.
8. Tugwell P, Bombardier C, Buchanan WW, et al. Methotrexate in rheumatoid arthritis: impact on quality of life assessed by traditional standard-item and individualized patient preference health status questionnaires. Arch Intern Med 1990, 150:59.
9. Fries JF Toward an understanding of patient outcome measurement. Arthritis Rheum 1983, 26:697.
10. Ward MM Clinical measures in rheumatoid arthritis: which ones are most useful in assessing patients?. J Rheumatol 1993, 21:17.
11. Duffy CM, Watanabe Duffy KN Health assessment in the rheumatic diseases of childhood. Curr Opin Rheumatol 1997, 9:440.
12. World Health Organization The First Ten Years of the World Health Organization 1958, WHO, Geneva.
13. Tucker LB Whose life is it anyway? Understanding quality of life in children with rheumatic diseases. J Rheumatol 2000, 27:8.
14. Giannini EH, Ruperto R, Ravelli A, the Paediatric Rheumatology International Trials Organization (PRINTO) Preliminary definition of improvement in juvenile arthritis. Arthritis Rheum 1997, 40:1202.
15. 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, 34:873.
16. Singh G, Athreya BH, Fries JF, et al. Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum 1994, 37:1761.
17. Lovell DJ Newer functional outcome measurements in juvenile rheumatoid arthritis: a progress report. J Rheumatol 1992, 19:28-31. (Suppl 33).
18. Graham TB, Lovell DJ Outcome in pediatric rheumatic disease. Curr Opin Rheum 1997, 9:434.
19. Duffy CM, Arsenault L, Watanabe Duffy KN, 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.
20. Tucker LB, De Nardo BA, Abetz LN, et al. The childhood arthritis health profile (CAHP): validity and reliability of the condition specific scales [abstract]. Arthritis Rheum 1995, 38:S183.
21. Tucker LB, De Nardo BA, Schaller JG The Childhood Arthritis Health Profile: correlation of juvenile-rheumatoid arthritis specific scales with disease severity and activity [abstract]. Arthritis Rheum 1996, 39(Suppl):S57.
22. Streiner DK, Norman GR Health Measurement Scales: a Practical Guide to their Development and Use 1989, Oxford University Press, Oxford, UK.
23. Kirshner B, Guyatt G A methodologic framework for assessing health indices. J Chron Dis 1985, 38:27.
24. Wright VF, Law M, Crombie V, et al. Development of a self-report functional status index for juvenile rheumatoid arthritis. J Rheumatol 1994, 21:536.
25. Orvaschel H, Walsh G The assessment of adaptive functioning in children: a review of existing measures suitable for epidemiological and clinical services research 1984, National Institutes of Mental Health, Rockville, MD.
26. McDowell I, Newell C Measuring health a guide to rating scales and questionnaires 1987, Oxford University Press, Oxford, UK.
27. Norman GR, Streiner DL PDQ Statistics 1986, BC Decker, Toronto.
28. Duffy CM, Tucker L, Burgos-Vargas R Update on functional assessment tools. J Rheumatol 2000, 27(Suppl 58):11.
29. Katz P Patient outcomes in rheumatology: a review of measures. Arthritis Rheum 2003, 49(Suppl 5):S1.
30. Brook RH, Appel FA Quality of care assessment: choosing a model for peer review. N Engl J Med 1973, 288:1323.
31. Feinstein AR, Josephy BR, Wells CK Scientific and clinical problems in indexes of functional disability. Ann Intern Med 1986, 105:413.
32. Guyatt GH, Veldhuyzen Van Zanten SJO, Feeny DH, et al. Measuring quality of life in clinical trials: a taxonomy and review. Can Med Assoc J 1989, 140:1441.
33. Gill TM, Feinstein AR A critical appraisal of the quality of Quality of Life measurements. JAMA 1994, 272:619.
34. Meenan RF, Gertman PM, Mason JH Measuring health status in arthritis: the arthritis impact measurement scales. Arthritis Rheum 1980, 23:146.
35. Fries JF, Spitz P, Kraines RG, et al. Measurement of patient outcome in arthritis. Arthritis Rheum 1980, 23:137.
36. Tugwell P, Bombardier C, Buchanan WW, et al. The MACTAR patient preference questionnaire: an individualized functional priority approach for assessing improvement in clinical trials in rheumatoid arthritis. J Rheumatol 1987, 14:446.
37. Meenan RF, Gertman PM, Mason JH, et al. The arthritis impact measurement scales: further investigations of a health status measure. Arthritis Rheum 1982, 25:1048.
38. Potts MK, Brandt K Evidence of the validity of the arthritis impact measurement scales. Arthritis Rheum 1987, 30:93.
39. Duffy CM, Watanabe Duffy KN, Gladman DD, et al. Utility of the arthritis impact measurement scales for patients with psoriatic arthritis. J Rheumatol 1992, 19:1727.
40. Anderson JJ, Firschein HE, Meenan RF Sensitivity of a health status measure to short-term clinical changes in arthritis. Arthritis Rheum 1989, 32:844.
41. Fries JF, Spitz PW, Young DY The dimensions of health outcomes: the health assessment questionnaire, disability and pain scales. J Rheumatol 1982, 9:789.
42. Pincus T, Callaghan LF, Brooks RH, et al. Self-report questionnaire scores in rheumatoid arthritis compared with traditional physical, radiographic and laboratory measures. Ann Intern Med 1989, 110:259.
43. Felson DT, Anderson JJ, Boers M, et al. The American College of Rheumatology core set of disease activity measures for rheumatoid arthritis clinical trials. Arthritis Rheum 1993, 36:729.
44. Tugwell P, Bombardier C, Buchanan WW, et al. Methotrexate in rheumatoid arthritis patients: impact on quality of life-assessed by traditional standard-item and individualized patient preference health status questionnaires. Arch Intern Med 1990, 150:59.
45. Singsen BH Health status (arthritis impact) in children with chronic rheumatic diseases: current measurement issues and an approach to instrument design. Arthritis Care Res 1991, 4:87.
46. Coulton CJ, Zborowsky E, Lipton J, et al. Assessment of the reliability and validity of the arthritis impact measurement scales for children with juvenile arthritis. Arthritis Rheum 1987, 30:819.
47. Wright VF, Longo Kimber J, Law M, et al. The Juvenile Arthritis Functional Status Index (JASI): a validation study. J Rheumatol 1996, 23:1066.
48. Feldman BM, Grundland B, McCullough L, Wright V Distinction of quality of life, health-related quality of life, and health status in children referred for rheumatology care. J Rheumatol 2000, 27:226.
49. Landgraf JM, Abetz L, Ware JE Child Health Questinnaire (CHQ): A User's Manual 1996, The Health Institute, New England Medical Center, Boston, MA.
50. Varni JW, Seid M, Rode CA The Peds QL: measurement model for the Pediatric Quality of Life Inventory. Med Care 1999, 37:126.
51. Singh G, Brown B, Athreya B Functional status in juvenile rheumatoid arthritis: sensitivity to change of the childhood health assessment questionnaire [abstract]. Arthritis Rheum 1991, 34:S81.
52. Andersson Gare B, Fasth A, Wiklund I Measurement of functional status in juvenile chronic arthritis: evaluation of a Swedish version of the Childhood Health Assessment Questionnaire. Clin Exp Rheumatol 1993, 11:569.
53. Andersson Gare B, Fasth A The natural history of juvenile chronic arthritis: a population based cohort study. II: Outcome. J Rheumatol 1995, 22:308.
54. Ruperto N, Ravelli A, Levison JE, et al. Long term 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.
55. Minden K, Kiessling U, Listing J, et al. Prognosis of patients with juvenile chronic arthritis and juvenile spondyloarthropathy. J Rheumatol 2000, 27:2256.
56. Guillaume S, Prieur AM, Coste J, Job-Deslandre C Long-term outcome and prognosis in oligo-articular onset juvenile idiopathic arthritis. Arthritis Rheum 2000, 43:1858.
57. Zak M, Pedersen FK Juvenile chronic arthritis into adulthood: a long-term follow up study. Rheumatology 2000, 39:198.
58. Lomater C, Gerloni V, Gattinara M, et al. Systemic onset juvenile idiopathic arthritis: a retrospective study of 80 consecutive patients followed for 10 years. J Rheumatol 2000, 27:491.
59. Spiegel LR, Schneider R, Lang BA, et al. Early predictors of poor functional outcome in systemic onset juvenile rheumatoid arthritis: a multicentre cohort study. Arthritis Rheum 2000, 43:2402.
60. Oen K, Malleson P, Cabral D, et al. Disease course and outcome of juvenile rheumatoid arthritis in a multicentre cohort. J Rheumatol 2002, 29:1989.
61. Fantini F, Gerloni V, Gattinara M, et al. Remission in juvenile chronic arthritis: a cohort study of 683 consecutive cases with a mean 10 year follow up. J Rheumatol 2003, 30:579.
62. Flato B, Lien G, Smerdel A, et al. Prognostic factors in juvenile rheumatoid arthritis: a case-control study revealing early predictors and outcome after 14.9 years. J Rheumatol 2003, 30:386.
63. Foster HE, Marshall N, Myers A, et al. Outcome in adults with juvenile idiopathic arthritis. Arthritis Rheum 2003, 48:767.
64. Bowyer S, Roettcher PA, Higgins GC, et al. Health status of patients with juvenile rheumatoid arthritis at 1 and 5 years after diagnosis. J Rheumatol 2003, 30:394.
65. Oen K, Malleson P, Cabral D, et al. Early predictors of long-term outcome in patients with juvenile rheumatoid arthritis: subset-specific correlations. J Rheumatol 2003, 30:585.
66. Doherty E, Yanni G, Conroy RM, et al. A comparison of child and parent ratings of disability and pain in juvenile chronic arthritis. J Rheumatol 1993, 20:1563.
67. Len C, Goldenberg J, Bosi Ferraz M, et al. Crosscultural reliability of the Childhood Health Assessment Questionnaire. J Rheumatol 1994, 21:2349.
68. Fantini F, Corvaglia G, Bergomi P, et al. Validation of the Italian version of the Stanford Childhood Health Assessment Questionnaire for measuring functional status for children with chronic arthritis. Clin Exp Rheumatol 1995, 13:785.
69. Van der Net, Prakken ABJ, Helders PJM, et al. Correlates of disablement in polyarticular juvenile chronic arthritis: a cross sectional study. Br J Rheumatol 1996, 35:91.
70. Goycochea-Robles MV, Garduno-Espinosa J, Vilchis-Guizar E, et al. Validation of a Spanish version of the Childhood Health Assessment Questionnaire. J Rheumatol 1997, 24:2242.
71. Arguedas O, Andersson-Gare B, Fasth A, et al. Development of a Costa Rican version of the Childhood Health Assessment Questionnaire. J Rheumatol 1997, 24:2233.
72. Flato B, Soskaar D, Vinje O, et al. Measuring disability in early juvenile arthritis: Evaluation of a Norwegian version of the Childhood Health Assessment Questionnaire. J Rheumatol 1998, 25:1851.
73. Ruperto N, Ravelli A, Pistorio A, et al. Cross-cultural adaptation and psychometric evaluation of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ) in 32 countries. Clin Exp Rheumatol 2001, 19(Suppl 23):S1-S9.
74. Pouchot J, Larbre JP, Lemelle I, et al. Validation of the French version of the Child Health Questionnaire in juvenile idiopathic arthritis. Rev Rhum 2002, 69:468.
75. Madi SM, Al Mayouf SM, Grainger CG, Bahabri SA The Arabic version of the Child Health Questionnaire modified for Arabic children. Saudi Med J 2004, 25:83.
76. Ruperto N, Ravelli A, Migliavacca D, et al. Responsiveness of clinical measures in children with oligoarticular juvenile chronic arthritis. J Rheumatol 1999, 26:1827.
77. Lovell DJ, Giannini EH, Reiff A, et al. Etanercept in children with polyarticular juvenile rheumatoid arthritis. Pediatric Rheumatology Collaborative Study Group. N Engl J Med 2000, 342:763-769.
78. Ruperto N, Murray K, Gerloni V, et al. A randomized trial of methotrexate in medium versus high doses in children with juvenile idiopathic arthritis who failed on standard dose. Arthritis Rheum 2002, 49(Suppl):S232.
79. Fan JS, Wessel J, Ellsworth J The relationship between strength and function in females with juvenile rheumatoid arthritis. J Rheumatol 1998, 25:1399.
80. Wessel J, Kaup C, Fan J, et al. Isometric strength in children with arthritis: reliability and relation to function. Arthritis Care Res 1999, 12:238.
81. Miller ML, Kress AM, Berry CA Decreased physical function in juvenile rheumatoid arthritis. Arthritis Care Res 1999, 12:309.
82. Bekkering WP, ten Cate R, van Suijlekom-Smit LW, et al. The relationship between impairments in function and disabilities in independent function in children with systemic juvenile idiopathic arthritis. J Rheumatol 2001, 28:1099.
83. Epps H, Hurley M, Utley M Development and evaluation of a single value score to assess global range of motion in juvenile idiopathic arthritis. Arthritis Rheum 2002, 47:398.
84. Takken T, van der Net, Helders PJ Relationship between functional ability and physical fitness in juvenile idiopathic arthritis patients. Scand J Rheumatol 2003, 32:174.
85. Sallfors C, Hallberg LR, Fasth A Gender and age differences in pain, coping and health status among children with chronic arthritis. Clin Exp Rheumatol 2003, 21:785.
86. Oen K, Reed M, Malleson P, et al. Radiologic outcome and its relationship to functional disability in juvenile rheumatoid arthritis. J Rheumatol 2003, 30:832.
87. Dempster H, Porepa M, Young N, Feldman BM The clinical meaning of functional outcome scores in children with juvenile arthritis. Arthritis Rheum 2001, 44:1768.
88. Billings AG, Moos RF, Miller JJ, et al. Psychosocial adaptation in juvenile rheumatic disease: a controlled evaluation. Health Psychol 1987, 6:343.
89. Lovell DJ, Howe S, Shear S, et al. Development of a disability measurement tool for juvenile rheumatoid arthritis. Arthritis Rheum 1989, 32:1390.
90. Chambers LW, MacDonald LA, Tugwell P, et al. The McMaster Health Index Questionnaire as a measure of the quality of life for patients with rheumatoid disease. J Rheumatol 1982, 9:780.
91. Baildam EM, Holt PJL, Conway SC, et al. The association between physical function and psychological problems in children with juvenile chronic arthritis. Br J Rheumatol 1995, 34:470.
92. Giannini EH, Lovell DJ, Silverman ED, for the Pediatric Rheumatology Collaborative Study Group Intravenous immunoglobulin in the treatment of polyarticular juvenile rheumatoid arthritis: a phase I/II study. J Rheumatol 1996, 23:919.
93. Henderson CJ, Cawkwell GD, Specker BL, et al. Predictors of total body bone mineral density in non-corticosteroid-treated prepubertal children with juvenile rheumatoid arthritis. Arthritis Rheum 1997, 40:1967.
94. Celiker R, Bal S, Bakkaloglu A, et al. Factors playing a role in the development of decreased bone mineral density in juvenile chronic arthritis. Rheumatol Int 2003, 23:127.
95. Bloom BJ, Owens JA, McGuinn M, et al. Sleep and its relationship to pain, dysfunction, and disease activity in juvenile rheumatoid arthritis. J Rheumatol 2002, 29:169.
96. Duffy CM, Arsenault L, Watanabe Duffy KN Level of agreement between parents and children in rating dysfunction in juvenile rheumatoid arthritis and juvenile spondyloarthritides. J Rheumatol 1993, 20:2134.
97. Achenbach TM, Edelbrook C Manual for the Child Behaviour Checklist and Revised Child Behaviour Profile 1983, Queen City, Burlington, VT.
98. Maunuksela EL, Olkkala KT, Korpela R Measurement of pain in children with self-reporting and behavioural assessment. Clin Pharmacol Ther 1987, 42:137.
99. Duffy CM, Arsenault L, Watanabe Duffy KN, et al. Validity and sensitivity to change of the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) [abstract]. Arthritis Rheum 1993, 36(Suppl):S144.
100. Duffy CM, Arsenault L, Watanabe Duffy KN, et al. Relative sensitivity to change of the Juvenile Arthritis Quality of Life Questionnaire following a new treatment [abstract]. Arthritis Rheum 1994, 37(Suppl):S196.
101. Duffy CM, Arsenault L, Watanabe Duffy KN, et al. Relative sensitivity to change of the Juvenile Arthritis Quality of Life Questionnaire on sequential follow up [abstract]. Arthritis Rheum 1995, 38(Suppl):S178.
102. Duffy CM, Watanabe Duffy KN, Gibbon M, et al. Accuracy of functional outcome measures in defining improvement in juvenile idiopathic arthritis [abstract]. Ann Rheum Dis 2000, 59:724.
103. Takken T, van der Net, Kuis W, Helders PJ Aquatic fitness training for children with juvenile idiopathic arthritis. Rheumatology 2003, 42:1408.
104. Selvaag AE, Flato B, Lien G, et al. Measuring health status in early juvenile idiopathic arthritis: determinants and responsiveness of the Child Health Questionnaire. J Rheumatol 2003, 30:1602.
105. Varni JW, Seid M, Smith Knight T, et al. The Peds QL in Pediatric Rheumatology: reliability, validity and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis Rheum 2002, 46:714.
106. Isenberg DA, Allen E, Farewell V, et al. International consensus on outcome measures for patients with idiopathic inflammatory myopathies: development and initial validation of myositis activity and damage indices in patients with adult onset disease. Rheumatology 2003, 42:1.
107. Miller FW, Rider LG, Chung YL, et al. Proposed core set measures for disease outcome assessment in adult and juvenile idiopathic inflammatory myopathies. Rheumatology 2001, 40:1262.
108. Ruperto N, Ravelli A, Murray KJ, et al. Preliminary core set of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositis. Rheumatology 2003, 42:1.
109. Rider L, Giannini EH, Harris-Love M, et al. Defining clinical improvement in adult and juvenile myositis. J Rheumatol 2003, 30:603.
110. Lovell DJ, Lindsley CB, Rennenbohm RM, et al. Development of validated disease activity and damage indices for the juvenile idiopathic inflammatory myopathies: II. The Childhood Myositis Assessment Scale (CMAS): a quantitative tool for the evaluation of muscle function. The Juvenile Dermatomyositis Disease Activity Collaborative Study Group. Arthritis Rheum 1999, 42:2213.
111. Feldman BM, Ayling-Campos A, Luy L, et al. Measuring disability in juvenile dermatomyositis: validity of the Childhood Health Assessment Questionnaire. J Rheumatol 1995, 22:326.
112. Huber AM, Lang B, LeBlanc C, et al. Medium and long-term functional outcomes in a multi-center cohort of children with juvenile dermatomyositis. Arthritis Rheum 2000, 43:541.
113. Huber AM, Hicks JE, Lachenbruch PA, et al. Validation of the Childhood Health Assessment Questionnaire in the juvenile idiopathic myopathies. J Rheumatol 2001, 28:1106.
114. Takken T, Elst E, Spermon N, et al. The physiological and physical determinants of functional ability measures in children with dermatomyositis. Rheumatology 2003, 49:591.
115. Brunner HI, Feldman BM, Bombardier C, Silverman ED The SLEDAI, SLAM and BILAG are sensitive to clinical change in childhood-onset systemic lupus erythematosus. Arthritis Rheum 1999, 42:1354.
116. Brunner HI, Silverman ED, Bombardier C, Feldman BM European Consensus Lupus Activity Measurement is sensitive to change in childhood-onset systemic onset lupus erythematosus. Arthritis Rheum 2003, 49:335.
117. Brunner HI, Silverman ED, To T, et al. Risk factors for damage in childhood-onset systemic lupus erythematosus: cumulative disease activity and medication use predict disease damage. Arthritis Rheum 2002, 46:436.
118. Ravelli A, Duarte-Salazar C, Buratti S, et al. Assessment of damage in juvenile-onset systemic lupus erythematosus: a multi-centre cohort study. Arthritis Rheum 2003, 49:501.