Health of children with chronic arthritis: Relationship of different measures and the quality of parent proxy reporting

Arthritis Care and Research

Volumn 51, Issue 5, 2004, Pages 763-773

  Brunner, Hermine I ^a   Klein Gitelman, Marisa S ^b   Miller, Michael J ^b   Trombley, Michael ^c   Baldwin, Nicole ^c   Kress, Angela ^b   Johnson, Anne L ^a   Barron, Andrea C ^a   Griffin, Thomas A ^a   Passo, Murray H ^a   Lovell, Daniel J ^a  

^a UNIVERSITY OF CINCINNATI   (United States)

^b NORTHWESTERN UNIVERSITY   (United States)

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

Author keywords

Arthritis; Children; JAQQ; PedsQL; Quality of life; Standard gamble

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; CHILD HEALTH; CHILDHOOD HEALTH ASSESSMENT QUESTIONNAIRE; CHRONIC ARTHRITIS; CORRELATION ANALYSIS; CUSTODY; DISABILITY; FEMALE; HEALTH STATUS; HUMAN; INTERMETHOD COMPARISON; JUVENILE HEALTH ASSESSMENT QUESTIONNAIRE; MAJOR CLINICAL STUDY; MALE; MODIFIED STANDARD GAMBLE TECHNIQUE; OUTCOMES RESEARCH; PAIN; PAIN ASSESSMENT; PEDIATRIC QUALITY OF LIFE INVENTORY; QUALITY OF LIFE; QUALITY OF PARENT PROXY REPORTING; RATING SCALE; SCORING SYSTEM; VISUAL ANALOG SCALE; VISUAL ANALOG SCALE OF PAIN; VISUAL ANALOG SCALE OF WELLBEING; WELLBEING;

ADOLESCENT; ADULT; ARTHRALGIA; ARTHRITIS; CHILD; CHILD, PRESCHOOL; CHRONIC DISEASE; DISABILITY EVALUATION; FEMALE; HEALTH; HEALTH STATUS INDICATORS; HUMANS; MALE; PARENTS; PROXY; QUALITY OF LIFE;

EID: 5644229594     PISSN: 21514658     EISSN: None     Source Type: Journal    
DOI: 10.1002/art.20689     Document Type: Article

References (49)

1. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001;5:1-157.
2. World Health Organization Assessment Surveys and Terminology Team. ICIDH-2: International Classification of Functioning and Disability. Prefinal version. Geneva: World Health Organization; 2000.
3. Brock DW. The separatibility of health and well-being. In: Murray CJL, Salomon JA, Mathers CD, Lopez AD, eds. Summary measures of population health. Geneva: World Health Organization; 2003.
4. Von Neumann J, Morgenstein O. Theory of games and economic behavior. Princeton (NJ): Princeton University Press; 1944.
5. Streiner DL, Norman GR. Health measurement scales: a practical guide to their development and use: Oxford medical publications. Oxford: Oxford University Press; 1989 p. vii, 175.
6. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999;37: 126-39.
7. Drotar D. Measuring health-related quality of life in children and adolescents. Mahwah (NJ): Lawrence Erlbaum Associates; 1998.
8. Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory generic core scales and rheumatology module. Arthritis Rheum 2002;46:714-25.
9. Eiser C, Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001;10:347-57.
10. Ottenbacher KJ. An examination of reliability in developmental research. J Dev Behav Pediatr 1995;16:177-82.
11. Doherty E, Yanni G, Conroy RM, Bresnihan B. A comparison of child and parent ratings of disability and pain in juvenile chronic arthritis. J Rheumatol 1993;20:1563-6.
12. Eiser C, Morse R. The measurement of quality of life in children: past and future perspectives. J Dev Behav Pediatr 2001;22:248-56.
13. Brunner H, Maker D, Grundland B, Young NL, Blanchette V, Stain AM, et al. Preference-based measurement of health related quality of life (HRQL) in children with chronic musculoskeletal disorders (MSKD): utilities by standard gamble do not correlate with preferences measured by other techniques. Med Decis Making 2003;23:314-322.
14. Juniper EF, Guyatt GH, Feeny DH, Griffith LE, Ferrie PJ. Minimum skills required by children to complete health-related quality of life instruments for asthma: comparison of measurement properties. Eur Respir J 1997;10:2285-94.
15. Brunner HI, Giannini EH. Health-related quality of life in children with rheumatic diseases. Curr Opin Rheumatol 2003;15:602-12.
16. Singh G, Athreya BH, Fries JF, Goldsmith DP. Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum 1994;37:1761-9.
17. Anderson RN. United States life tables, 1998. Natl Vital Stat Rep 2001;48:1-40.
18. 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 rheumatologic care. J Rheumatol 2000;27:226-33.
19. Dempster H, Porepa M, Young N, Feldman BM. The clinical meaning of functional outcome scores in children with juvenile arthritis. Arthritis Rheum 2001;44:1768-74.
20. Duffy CM, Duffy KN. Health assessment in the rheumatic diseases of childhood. Curr Opin Rheumatol 1997;9:440-7.
21. Duffy CM, Arsenault L, Duffy KN, Paquin JD, Strawczynski H. 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.
22. Duffy CM, Tucker L, Burgos-Vargas R. Update on functional assessment tools. J Rheumatol 2000;27 Suppl 58:11-4.
23. Duffy CM, Arsenault L, Duffy KN. Level of agreement between parents and children in rating dysfunction in juvenile rheumatoid arthritis and juvenile spondyloarthritides. J Rheumatol 1993;20:2134-9.
24. Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001;39:800-12.
25. Torrance GW. Utility approach to measuring health-related quality of life. J Chronic Dis 1987;40:593-603.
26. Rutten-van Molken MP, Bakker CH, van Doorslaer EK, van der Linden S. Methodological issues of patient utility measurement: experience from two clinical trials. Med Care 1995;33:922-37.
27. Bakker C, Rutten-van Molken M, Hidding A, van Doorslaer E, Bennett K, et al. Patient utilities in ankylosing spondylitis and the association with other outcome measures. J Rheumatol 1994;21:1298-304.
28. Brunner H, Klein-Gitelman M, Miller M, Housh N, Thrombley T, Sen S, et al. What is the minimal clinically important difference in worsening of the Childhood Health Assessment Questionnaire? Arthritis Rheum 2001;65 Suppl 9:S168.
29. Llewellyn-Thomas HA. Investigating patients' preferences for different treatment options. Can J Nurs Res 1997;29:45-64.
30. Zar JH. Biostatistical analysis. Upper Saddle River (NJ): Prentice-Hall; 1996.
31. Silverman FH. Intraclass correlation coefficient as an index of reliability of median scale values for sets of stimuli rated by equal-appearing intervals. Percept Mot Skills 1968;26:878.
32. Bartko JJ. The intraclass correlation coefficient as a measure of reliability. Psychol Rep 1966;19:3-11.
33. Donner A, Bull S. Inferences concerning a common intraclass correlation coefficient. Biometrics 1983;39:771-5.
34. Bland JM, Altman DG. A note on the use of the intraclass correlation coefficient in the evaluation of agreement between two methods of measurement. Comput Biol Med 1990;20: 337-40.
35. Armitage P, Berry G, Matthews JNS. Statistical methods in medical research. Maiden (MA): Blackwell Science; 2002.
36. Fleiss JL. The design and analysis of clinical experiments. New York: Wiley; 1986.
37. Franzblau A. Correlation coefficients. In: A primer of statisitics for non-statisticians. Orlando (FL): Harcourt; 1958.
38. Epstein AM, Hall JA, Tognetti J, Son LH, Conant L Jr. Using proxies to evaluate quality of life: can they provide valid information about patients' health status and satisfaction with medical care? Med Care 1989;27:S91-8.
39. Suarez-Almazor ME, Conner-Spady B. Rating of arthritis health states by patients, physicians, and the general public: implications for cost-utility analyses. J Rheumatol 2001;28: 648-56.
40. O'Brien BJ, Elswood J, Calin A. Willingness to accept risk in the treatment of rheumatic disease. J Epidemiol Commun Health 1990;44:249-52.
41. Stavem K. Reliability, validity and responsiveness of two multiattribute utility measures in patients with chronic obstructive pulmonary disease. Qual Life Res 1999;8:45-54.
42. Juniper EF, Thompson AK, Roberts JN. Can the standard gamble and rating scale be used to measure quality of life in rhinoconjunctivitis: comparison with the RQLQ and SF-36. Allergy 2002;57:201-6.
43. Foster HE, Marshall N, Myers A, Dunkley P, Griffiths ID. Outcome in adults with juvenile idiopathic arthritis: a quality of life study. Arthritis Rheum 2003;48:767-75.
44. Talamo J, Prater A, Gallivan S, Young A. Use of the Short Form 36 (SF36) for health status measurement in rheumatoid arthritis. Br J Rheumatol 1997;36:463-9.
45. Pouchot J, Ruperto N, Lemelle I, Sommelet D, Grouteau E, David L, et al. The French version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ). Clin Exp Rheumatol 2001;19:S60-5.
46. Saw SM, Gazzard G, Au Eong KG, Koh D. Utility values and myopia in teenage school students. Br J Ophthalmol 2003;87: 341-5.
47. Yi MS, Britto MT, Wilmott RW, Kotagal UR, Eckman MH, Nielson DW, et al. Health values of adolescents with cystic flbrosis. J Pediatr 2003;142:133-40.
48. Naraine VS, Risebrough NA, Oh P, Blanchette VS, Lee S, Stain AM, et al. Health-related quality-of-life treatments for severe haemophilia: utility measurements using the standard gamble technique. Haemophilia 2002;8:112-20.
49. Saigal S, Rosenbaum PL, Feeny D, Burrows E, Furlong W, Stoskopf BL, et al. Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics 2000;105:569-74.