Development and preliminary validation of a systemic lupus erythematosus-specific quality-of-life instrument (SLEQOL)

Rheumatology

Volumn 44, Issue 10, 2005, Pages 1267-1276

  Leong, Khai Pang ^b   Kong, K O ^b   Thong, B Y H ^b   Koh, E T ^b   Lian, T Y ^b   Teh, C L ^b   Cheng, Y K ^b   Chng, H H ^b   Badsha, H ^b   Law, W G ^b   Lau, T C ^b   Chew, L C ^b   Ho, H J ^b   Pong, L Y ^b   Hoi, L S ^b   Sangeetha, N ^b   Chan, S P ^a   Howe, H S ^b  

^a Health Promotion Board Singapore   (Singapore)

^b TAN TOCK SENG HOSPITAL   (Singapore)

Author keywords

Activity index; Factor analysis; Helplessness; Quality of life; Rasch model analysis; Systemic lupus erythematosus

Indexed keywords

ARTICLE; COHORT ANALYSIS; CORRELATION ANALYSIS; DISEASE COURSE; FACTORIAL ANALYSIS; HUMAN; MAJOR CLINICAL STUDY; MEDICAL SPECIALIST; MENTAL HEALTH; PHYSICAL ACTIVITY; PREVALENCE; PRIORITY JOURNAL; PSYCHOMETRY; QUALITY OF LIFE; QUESTIONNAIRE; RELIABILITY; SINGAPORE; SOCIAL ASPECT; STATISTICAL MODEL; SYSTEMIC LUPUS ERYTHEMATOSUS; VALIDATION PROCESS;

ACTIVITIES OF DAILY LIVING; ADULT; FACTOR ANALYSIS, STATISTICAL; HEALTH STATUS INDICATORS; HUMANS; LUPUS ERYTHEMATOSUS, SYSTEMIC; MIDDLE AGED; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS; SEVERITY OF ILLNESS INDEX;

EID: 27144476126     PISSN: 14620324     EISSN: 14620332     Source Type: Journal    
DOI: 10.1093/rheumatology/keh605     Document Type: Article

References (40)

1. Ramsey-Goldman R, Isenberg DA. Systemic lupus erythematosus measures. Arthritis Care Res 2003;49:S225-33.
2. Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med 1993;118:622-9.
3. Strand V, Gladman D, Isenberg D, Petri M, Smolen J, Tugwell P. Outcome measures to be used in clinical trials in systemic lupus erythematosus. J Rheumatol 1999;26:490-7.
4. Burckhardt CS, Archenholtz B, Bjelle A. Quality of life of women with systemic lupus erythematosus: A comparison with women with rheumatoid arthritis. J Rheumatol 1993;20:977-81.
5. Dobkin PL, Da Costa D. Dritsa M et al. Quality of life in systemic lupus erythematosus patients during more and less active disease states: differential contributors to mental and physical health. Arthritis Care Res 1999;12:401-10.
6. Thumboo J. Measuring functional status in patients with systemic lupus erythematosus. APLAR J Rheumatol 2003;6:184-7.
7. Thumboo J, Fong KY, Ng TP et al. Validation of the MOS SF-36 for quality of life assessment of patients with systemic lupus erythematosus in Singapore. J Rheumatol 1999;26:97-102.
8. Wiginton KL. Illness representations: Mapping the experience of lupus. Health Educ Behav 1999;26:443-53.
9. Engle EW, Callahan LF, Pincus T, Hochberg MC. Learned helplessness in systemic lupus erythematosus: Analysis using the Rheumatology Attitudes Index. Arthritis Rheum 1990;33:281-6.
10. Thumboo J, Fong KY, Chan SP et al. The Rheumatology Attitudes Index and its helplessness subscale are valid and reliable measures of learned helplessness in Asian patients with systemic lupus erythematosus. J Rheumatol 1999;26:1512-7.
11. Murawski MM, Miederhoff PA. On the generalizability of statistical expressions of health related quality of life instrument responsiveness: a data synthesis. Qual Life Res 1998;7:11-22.
12. Webb SM, Prieto L, Badia X et al. Acromegaly Quality of Life Questionnaire (ACROQOL) a new health-related quality of life questionnaire for patients with acromegaly: Development and psychometric properties. Clin Endocrinol 2002;57:251-8.
13. McKenna SP, Doward LC, Whalley D, Tennant A, Emery P, Veale DJ. Development of the PsAQoL: A quality of life instrument specific to psoriatic arthritis. Ann Rheum Dis 2004;63:162-9.
14. Grootscholten C, Ligtenberg G, Derksen RH et al. Health-related quality of life in patients with systemic lupus erythematosus: Development and validation of a lupus specific symptom checklist. Qual Life Res 2003;12:635-44.
15. Tan EM, Cohen AS, Fries JF et al. The 1982 revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum 1982;25:1271-7.
16. Hochberg MC. Updating the American College of Rheumatology revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum 1997;40:1725.
17. Bombardier C, Gladman DD, Urowitz MB, Caron D, Chang CH. Derivation of the SLEDAI. A disease activity index for lupus patients. The Committee on Prognosis Studies in SLE. Arthritis Rheum 1992;35:630-40.
18. Liang MH, Socher SA, Larson MG, Schur PH. Reliability and validity of six systems for the clinical assessment of disease activity in systemic lupus erythematosus. Arthritis Rheum 1989; 32:1107-18.
19. Nicassio PM, Wallston KA, Callahan LF, Herbert M, Pincus T. The measurement of helplessness in rheumatoid arthritis. The development of the Arthritis Helplessness Index. J Rheumatol 1985;12:462-7.
20. Ware JE, Sherbourne CD. The MOS 36-Item Short-Form Health Survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30:473-83.
21. McHorney CA, Ware JE, Raczek AE. The MOS 36-Item Short-Form Health Survey (SF-36). II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1992;31:247-63.
22. McHorney CA, Ware JE, Lu RJF, Sherbourne CD. The MOS 36-Item Short-Form Health Survey (SF-36). III. Tests of data quality, scaling assumptions. and reliability across diverse patient groups. Med Care 1994;32:40-66.
23. Stoll T, Seifert B, Isenberg DA. SLICC/ACR Damage Index is valid, and renal and pulmonary organ scores are predictors of severe outcome in patients with systemic lupus erythematosus. Br J Rheumatol 1996;35:248-54.
24. Gladman DD, Ginzler E, Goldsmith C et al. The development and initial validation of the Systemic Lupus International Collaborating Clinics/ American College of Rheumatology Damage Index for systemic lupus erythematosus. Arthritis Rheum 1996;39:363-9.
25. Juniper EF, Guyatt GH, Willan A, Griffith LE. Determining a minimal important change in a disease-specific quality of life questionnaire. J Clin Epidemiol 1994;47:81-7.
26. Wright JG, Young NL. A comparison of different indices of responsiveness. J Clin Epidemiol 1997;50:239-46.
27. Liang MH, Larson MG, Cullen KE, Schwarz JA. Comparative measurement efficiency and sensitivity of five health status instruments for arthritis research. Arthritis Rheum 1985;28:542-7.
28. Liang MH, Fossel AH, Larson MG. Comparisons of five health status instruments for orthopaedic evaluation. Med Care 1990; 28:632-42.
29. Kazis LE, Anderson JJ, Meenan RF. Effect sizes for interpreting changes in health status. Med Care 1989;27:S178-89.
30. Guyatt G, Walter S, Norman G. Measuring change over time: Assessing the usefulness of evaluative instruments. J Chronic Dis 1987;40:171-8.
31. Bond TG, Fox CM. Applying the Rasch model. New Jersey: Lawrence Erlbaum Associates, 2001.
32. Prieto L, Alonso J, Lamarca R. Classical test theory versus Rasch analysis for quality of life questionnaire reduction. Health Qual Life Outcomes. 2003:1:27. Published online at http://www.hqlo.com/content/1/1/27.
33. Wolfe F. Which HAQ is best? A comparison of the HAQ, MHAQ and RA-HAQ, a difficult 8 item HAQ (DHAQ), and a rescored 20 item HAQ (HAQ20): analyses in 2,491 rheumatoid arthritis patients following leflunomide initiation. J Rheumatol 2001;28:982-9.
34. Beaton DE, Boers M, Wells GA. Many faces of the minimal clinically important difference (MCID): A literature review and directions for future research. Curr Opin Rheumatol 2002;14:109-14.
35. Gladman DD, Urowitz MB, Ong A, Gough J, MacKinnon A. Lack of correlation among the 3 outcomes describing SLE: Disease activity, damage and quality of life. Clin Exp Rheumatol 1996; 14:305-8.
36. Hanly JG. Disease activity, cumulative damage and quality of life in systematic lupus erythematosus: Results of a cross-sectional study. Lupus 1997;6:243-7.
37. Wang C, Mayo NE, Fortin PR. The relationship between health related quality of life and disease activity and damage in systemic lupus erythematosus. J Rheumatol 2001;28:525-32.
38. Stoll T, Gordon C, Seifert B et al. Consistency and validity of patient administered assessment of quality of life by the MOS SF-36; its association with disease activity and damage in patients with systemic lupus erythematosus. J Rheumatol 1997;24:1608-14.
39. Fortin PR, Abrahamowicz M, Neville C et al. Impact of disease activity and cumulative damage on the health of hipus patients. Lupus 1998;7:101-7.
40. Kahneman D, Krueger AB, Schkade DA, Schwarz N, Stone AA. A survey method for characterizing daily life experience: The day reconstruction method. Science 2004;306:1776-80.