The use of rheumatoid arthritis health-related quality of life patient questionnaires in clinical practice: Lessons learned

Arthritis Care and Research

Volumn 49, Issue 4, 2003, Pages 574-584

  Russak, Simcha M ^a   Croft Jr , Joseph D ^b   Furst, Daniel E ^c   Hohlbauch, Andriana ^a   Liang, Matthew H ^d   Moreland, Larry ^e   Ofman, Joshua J ^a,f   Paulus, Harold ^g   Simon, Lee S ^h   Weisman, Michael ^f   Tugwell, Peter ⁱ  

^a Zynx Health   (United States)

^b Arthritis Center PC   (United States)

^c BENAROYA RESEARCH INSTITUTE   (United States)

^d HARVARD SCHOOL OF PUBLIC HEALTH   (United States)

^e UNIVERSITY OF ALABAMA AT BIRMINGHAM   (United States)

^f CEDARS SINAI MEDICAL CENTER   (United States)

^g UNIVERSITY OF CALIFORNIA   (United States)

^h BETH ISRAEL DEACONESS MEDICAL CENTER   (United States)

ⁱ UNIVERSITY OF OTTAWA   (Canada)

Author keywords

Clinical practice; Quality of life; Questionnaires; Utilization

Indexed keywords

CLINICAL PRACTICE; EVIDENCE BASED MEDICINE; EXPERIENCE; HEALTH CARE; HEALTH SURVEY; HUMAN; INSTRUMENT; LEARNING; MEDICAL ASSESSMENT; MEDICAL LITERATURE; MEDICAL SOCIETY; NORMAL HUMAN; QUALITY OF LIFE; QUESTIONNAIRE; REVIEW; RHEUMATOID ARTHRITIS; RHEUMATOLOGY;

EID: 0042235010     PISSN: 21514658     EISSN: None     Source Type: Journal    
DOI: 10.1002/art.11208     Document Type: Review

References (87)

1. Grossman JM, Brahn E. Rheumatoid arthritis: current clinical and research directions. J Womens Health 1997;6:627-38.
2. Bendtsen P, Akerlind I, Hornquist JO. Assessment of quality of life in rheumatoid arthritis: methods and implications. Pharmacoeconomics 1994;5:286-98.
3. Nichol MB, Harada AS. Measuring the effects of medication use on health-related quality of life in patients with rheumatoid arthritis: a review. Pharmacoeconomics 1999;16:433-48.
4. Lawrence RC, Helmick CG, Arnett FC, Deyo RA, Feslon DT, Giannini EH, et al. Estimates of the prevalence of arthritis and selected musculoskeletal disorders in the United States. Arthritis Rheum 1998;41:778-99.
5. Stenstrom CH, Nisell R. Assessment of disease consequences in rheumatoid arthritis: a survey of methods classified according to the International Classification of Impairments, Disabilities, and Handicaps. Arthritis Care Res 1997;10:135-50.
6. Ward MM, Javitz HS, Yelin EH. The direct cost of rheumatoid arthritis. Value Health 2000;3:243-52.
7. Callahan LF. The burden of rheumatoid arthritis: facts and figures. J Rheumatol Suppl 1998;53:8-12.
8. Taylor D. A table for the degree of involvement in chronic arthritis. Can Med Assoc J 1937;36:608-10.
9. Boers M, van Riel PL, Felson DT, Tugwell P. Assessing the activity of rheumatoid arthritis. Baillieres Clin Rheumatol 1995;9:305-17.
10. Paulus HE, Bulpitt KJ. Rheumatoid arthritis: outcome measures. Rheum Dis Clin North Am 1995;21:605-18.
11. Testa MA, Simonson DC. Assessment of quality-of-life outcomes. N Engl J Med 1996;334:835-40.
12. Jacobs JWG, van der Heijde A, Rasker JJ, Bijlsma WJ. Measurement of functional ability and health status in the arthritic patient. Patient Educ Couns 1993;20:121-32.
13. Cheah SY, Clark C, Goldberg L, Li Wan PA, Phillips R. Outcome measures, pooled index and quality of life instruments in rheumatoid arthritis. J Clin Pharm Ther 1996;21:297-316.
14. Wolfe F, Pincus T. Standard self-report questionnaires in routine clinical and research practice - an opportunity for patients and rheumatologists. J Rheumatol 1991;18:643-6.
15. Patrick DL, Chiang YP. Measurement of health outcomes in treatment effectiveness evaluations: conceptual and methodological challenges. Med Care 2000;38(9 Suppl):II14-25.
16. Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med 1993;118:622-9.
17. Wolfe F, Pincus T. Listening to the patient: a practical guide to self-report questionnaires in clinical care. Arthritis Rheum 1999;42:1797-808.
18. Deyo RA, Inui TS. Toward clinical applications of health status measures: sensitivity of scales to clinically important changes. Health Serv Res 1984;19:277-89.
19. Carter WB, Bobbitt RA, Bergner M, Gilson BS. Validation of an interval scaling: the sickness impact profile. Health Serv Res 1976;11:516-28.
20. Bergner M, Bobbitt RA, Carter WB, Gilson BS. The Sickness Impact Profile: development and final revision of a health status measure. Med Care 1981;19:787-805.
21. Meenan RF, Anderson JJ, Kazis LE, Egger MJ, Altz-Smith M, Samuelson CO Jr, et al. Outcome assessment in clinical trials: evidence for the sensitivity of a health status measure. Arthritis Rheum 1984;27:1344-52.
22. Meenan RF, Gertman PM, Mason JH. Measuring health status in arthritis: the Arthritis Impact Measurement Scales. Arthritis Rheum 1980;23:146-52.
23. Tugwell P, Wells G, Strand V, Maetzel A, Bombardier C, Crawford B, et al. Leflunomide Rheumatoid Arthritis Investigators Group. Clinical improvement as reflected in measures of function and health-related quality of life following treatment with leflunomide compared with methotrexate in patients with rheumatoid arthritis: sensitivity and relative efficiency to detect a treatment effect in a twelve-month, placebo-controlled trial. Arthritis Rheum 2000;43:506-14.
24. Bombardier C, Ware J, Russell IJ, Larson M, Chalmers A, Read JL. Auranofin therapy and quality of life in patients with rheumatoid arthritis: results of a multicenter trial. Am J Med 1986;81:565-78.
25. Wolfe F, Pincus T. Data collection in the clinic. Rheum Dis Clin North Am 1995;21:321-58.
26. Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arthritis Rheum 1980;23:137-45.
27. Pincus T, Swearingen C, Wolfe F. Toward a multidimensional Health Assessment Questionnaire (MDHAQ): assessment of advanced activities of daily living and psychological status in the patient-friendly health assessment questionnaire format. Arthritis Rheum 1999;42:2220-30.
28. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30:473-83.
29. Buchbinder R, Bombardier C, Yeung M, Tugwell P. Which outcome measures should be used in rheumatoid arthritis clinical trials? Clinical and quality-of-life measures' responsiveness to treatment in a randomized controlled trial. Arthritis Rheum 1995;38:1568-80.
30. Van Gestel AM, Prevoo ML, van't Hof MA, van Rijswijk MH, van de Putte LB, van Riel PL. Development and validation of the European League Against Rheumatism response criteria for rheumatoid arthritis: comparison with the preliminary American College of Rheumatology and the World Health Organization/International League Against Rheumatism Criteria. Arthritis Rheum 1996;39:34-40.
31. Tugwell P, Boers M, OMERACT Committee. Developing consensus on preliminary core efficacy endpoints for rheumatoid arthritis clinical trials. J Rheumatol 1993;20:555-6.
32. Felson DT, Anderson JJ, Boers M, Bombardier C, Furst D, Goldsmith C, et al. American College of Rheumatology preliminary definition of improvement in rheumatoid arthritis. Arthritis Rheum 1995;38:727-35.
33. Wolfe F, Lassere M, van der Heidje D, Stucki G, Suarez-Almazor M, Pincus T, et al. Preliminary core set of domains and reporting requirements for longitudinal observational studies in rheumatology. J Rheumatol 1999;26:484-9.
34. Pincus T. Documenting quality management in rheumatic disease: are patient questionnaires the best (and only) method? Arthritis Care Res 1996;9:339-48.
35. Fries JF. How may quality of life for rheumatoid arthritis patients be enhanced by current and future treatments? Rheumatology (Oxford) 1999;38(Suppl 2):35-40.
36. Anderson KO, Keefe FJ, Bradley LA, McDaniel LK, Young LD, Turner RA, et al. Prediction of pain behavior and functional status of rheumatoid arthritis patients using medical status and psychological variables. Pain 1988;33:25-32.
37. Pincus T, Wolfe F. An infrastructure of patient questionnaires at each rheumatology visit: improving efficiency and documenting care. J Rheumatol 2000;27:2727-30.
38. Guillemin F. Functional disability and quality-of-life assessment in clinical practice. Rheumatology (Oxford) 2000;39(Suppl 1):17-23.
39. Pincus T, Callahan LF, Brooks RH, Fuchs HA, Olsen NJ, Kaye JJ. Self-report questionnaire scores in rheumatoid arthritis compared with traditional physical, radiographic, and laboratory measures. Ann Intern Med 1989;110:259-66.
40. National Committee on Vital and Health Statistics. Subcommittee on Populations. Classifying and reporting functional status; 2001. Accessed May 23, 2003. URL: http://ncvhs.hhs. gov/010716rp.htm
41. Wolfe F, Cathey MA. The assessment and prediction of functional disability in rheumatoid arthritis. J Rheumatol 1991;18:1298-1306.
42. Ward MM, Leigh JP, Fries JF. Progression of functional disability in patients with rheumatoid arthritis: associations with rheumatology subspecialty care. Arch Intern Med 1993;153:2229-37.
43. Sherrer YS, Bloch DA, Mitchell DM, Young DY, Fries JF. The development of disability in rheumatoid arthritis. Arthritis Rheum 1986;29:494-500.
44. Callahan LF, Bloch DA, Pincus T. Identification of work disability in rheumatoid arthritis: physical, radiographic and laboratory variables do not add explanatory power to demographic and functional variables. J Clin Epidemiol 1992;45:127-38.
45. Wolfe F, Hawley DJ. The long-term outcomes of rheumatoid arthritis: work disability: a prospective 18 year study of 823 patients. J Rheumatol 1998;25:2108-17.
46. Paimela RP, Marjatta L-R. Permanent work disability in patients with early rheumatoid arthritis. Arthritis Rheum 2000:43(9 Suppl):S154.
47. Lubeck DP, Spitz PW, Fries JF, Wolfe F, Mitchell DM, Roth SH. A multicenter study of annual health service utilization and costs in rheumatoid arthritis. Arthritis Rheum 1986;29:488-93.
48. Nevitt MC, Yelin EH, Henke CJ, Epstein WV. Risk factors for hospitalization and surgery in patients with rheumatoid arthritis: implications for capitated medical payment. Ann Intern Med 1986;105:421-8.
49. Pincus T, Brooks RH, Callahan LF. Prediction of long-term mortality in patients with rheumatoid arthritis according to simple questionnaire and joint count measures. Ann Intern Med 1994;120:26-34.
50. Wolfe F, Mitchell DM, Sibley JT, Fries JF, Bloch DA, Williams CA, et al. The mortality of rheumatoid arthritis. Arthritis Rheum 1994;37:481-94.
51. Pincus T, Callahan LF, Vaughn WK. Questionnaire, walking time and button test measures of functional capacity as predictive markers for mortality in rheumatoid arthritis. J Rheumatol 1987;14:240-51.
52. Callahan LF, Pincus T, Huston JW III, Brooks RH, Nance EP Jr, Kaye JJ. Measures of activity and damage in rheumatoid arthritis: depiction of changes and prediction of mortality over five years. Arthritis Care Res 1997;10:381-94.
53. Meenan RF, Mason JH, Anderson JJ, Guccione AA, Kazis LE. AIMS2: the content and properties of a revised and expanded Arthritis Impact Measurement Scales health status questionnaire. Arthritis Rheum 1992;35:1-10.
54. Guillemin F, Coste J, Pouchot J, Ghezail M, Bregeon C, Sany J, French Quality of Life in Rheumatology Group. The AIMS2-SF: a short form of the Arthritis Impact Measurement Scales 2. Arthritis Rheum 1997;40:1267-74.
55. Haavardsholm EA, Kvien TK, Uhlig T, Smedstad LM, Guillemin F. A comparison of agreement and sensitivity to change between AIMS2 and a short form of AIMS2 (AIMS2-SF) in more than 1,000 rheumatoid arthritis patients. J Rheumatol 2000;27:2810-6.
56. Tugwell P, Bombardier C, Buchanan WW, Goldsmith CH, Grace E, Hanna B. The MACTAR patient preference disability questionnaire - an individualized functional priority approach for assessing improvement in physical disability in clinical trials in rheumatoid arthritis. J Rheumatol 1987;14:446-51.
57. Edgington ES. Randomized single-subject experimental designs. Behav Res Ther 1996;34:567-74.
58. Guyatt G, Sackett D, Adachi J, Roberts R, Chong J, Rosenbloom D, et al. A clinician's guide for conducting randomized trials in individual patients. Can Med Assoc J 1988;139:497-503.
59. Johannessen T, Kristensen P, Petersen H, Fosstvedt D, Loge I, Kleveland PM, et al. The symptomatic effect of 1-day treatment periods with cimetidine in dyspepsia: combined results from randomized, controlled, single-subject trials. Scand J Gastroenterol 1991;26:974-80.
60. Frasca MA, Aldag JC. The single-patient clinical trial. Am Fam Physician 1988;37:195-9.
61. Wolfe F, Pincus T, O'Dell J. Evaluation and documentation of rheumatoid arthritis disease status in the clinic: which variables best predict change in therapy. J Rheumatol 2001;28:1712-7.
62. Mason JH, Meenan RF, Anderson JJ. Do self-reported arthritis symptom (RADAR) and health status (AIMS2) data provide duplicative or complementary information? Arthritis Care Res 1992;5:163-72.
63. Flowers N, Wolfe F. What do rheumatologists do in their practices? Arthritis Rheum 1999;41(9 Suppl):S337.
64. Watson D, Pennebaker JW. Health complaints, stress, and distress: exploring the central role of negative affectivity. Psychol Rev 1989;96:234-54.
65. Elmore JG, Barton MB, Moceri VM, Polk S, Arena PJ, Fletcher SW. Ten-year risk of false positive screening mammograms and clinical breast examinations. N Engl J Med 1998;338:1089-96.
66. Testa MA. Interpretation of quality-of-life outcomes: issues that affect magnitude and meaning. Med Care 2000;38(9 Suppl):II166-74.
67. Kaplan SH, Kravitz RL, Greenfield S. A critique of current uses of health status for the assessment of treatment effectiveness and quality of care. Med Care 2000;38(9 Suppl):II184-91.
68. Kvien TK. Epidemiology of disability in rheumatoid arthritis. Rheumatology (Oxford) 2002;41:121-3.
69. Boers M, Brooks P, Strand CV, Tugwell P. The OMERACT filter for outcome measures in rheumatology. J Rheumatol 1998;25:198-9.
70. Anastasi A. Psychological testing. New York: MacMillan; 1990.
71. Campbell DT, Fiske DW. Convergent and discriminant validation by the multitrait-multidimensional matrix. Psychol Bull 2000;56:81-105.
72. Lydick E, Epstein RS. Interpretation of quality of life changes. Qual Life Res 1993;2:221-6.
73. Guyatt GH. Making sense of quality-of-life data. Med Care 2000;38(9 Suppl):II175-9.
74. Wolfe F, Pincus T, Cohen S, Strand CV, Simon L, Tugwell P, et al. A program concerning patient self-report questionnaires alters beliefs and knowledge of US rheumatologists. Arthritis Rheum 2000;43(9 Suppl):S108.
75. Pincus T. Assessment of long-term outcomes of rheumatoid arthritis: how choices of measures and study designs may lead to apparently different conclusions. Rheum Dis Clin North Am 1995;21:619-54.
76. Lydick E. Approaches to the interpretation of quality-of-life scales. Med Care 2000;38(9 Suppl):II180-3.
77. Goldsmith CH, Boers M, Bombardier C, Tugwell P, OMERACT Committee. Criteria for clinically important changes in outcomes: development, scoring and evaluation of rheumatoid arthritis patient and trial profiles. J Rheumatol 1993;20:561-5.
78. Wells GA, Tugwell P, Kraag GR, Baker PR, Groh J, Redelmeier DA. Minimum important difference between patients with rheumatoid arthritis: the patient's perspective. J Rheumatol 1993;20:557-60.
79. Kosinski M, Zhao SZ, Dedhiya S, Osterhaus JT, Ware JE Jr. Determining minimally important changes in generic and disease-specific health-related quality of life questionnaires in clinical trials of rheumatoid arthritis. Arthritis Rheum 2000;43:1478-87.
80. Greenwood MC, Doyle DV, Ensor M. Does the Stanford Health Assessment Questionnaire have potential as a monitoring tool for subjects with rheumatoid arthritis? Ann Rheum Dis 2001;60:344-8.
81. Wolfe F. A reappraisal of HAQ disability in rheumatoid arthritis. Arthritis Rheum 2000;43:2751-61.
82. Kirwan JR. Links between radiological change, disability, and pathology in rheumatoid arthritis. J Rheumatol 2001;28:881-6.
83. Leigh JP, Fries JF. Predictors of disability in a longitudinal sample of patients with rheumatoid arthritis. Ann Rheum Dis 1992;51:581-7.
84. Ward MM. Clinical measures in rheumatoid arthritis: which are most useful in assessing patients? J Rheumatol 1994;21:17-27.
85. Felson DT, Anderson JJ. A review of evidence on the discriminant validity of outcome measures in rheumatoid arthritis. J Rheumatol 2001;28:422-6.
86. Furst DE. The basis for variability of response to anti-rheumatic crugs. Baillieres Clin Rheumatol 1988;2:395-424.
87. Liang MH, Larson MG, Cullen KE, Schwartz JA. Comparative measurement efficiency and sensitivity of five health status instruments for arthritis research. Arthritis Rheum 1985;28:542-7.