Development and validation of a disease-specific health-related quality of life measure, the LupusQoL, for adults with systemic lupus erythematosus

Arthritis Care and Research

Volumn 57, Issue 6, 2007, Pages 972-979

  McElhone, Kathleen ^a   Abbott, Janice ^b   Shelmerdine, Joanna ^c   Bruce, Ian N ^c   Ahmad, Yasmeen ^c   Gordon, Caroline ^d   Peers, Kate ^d   Isenberg, David ^e   Ferenkeh Koroma, Ada ^e   Griffiths, Bridget ^f   Akil, Mohamed ^g   Maddison, Peter ^h   Teh, Lee Suan ^a  

^a ROYAL BLACKBURN HOSPITAL   (United Kingdom)

^b UNIVERSITY OF CENTRAL LANCASHIRE   (United Kingdom)

^c MANCHESTER UNIVERSITY NHS FOUNDATION TRUST   (United Kingdom)

^d UNIVERSITY OF BIRMINGHAM   (United Kingdom)

^e MIDDLESEX HOSPITAL   (United Kingdom)

^f FREEMAN HOSPITAL   (United Kingdom)

^g ROYAL HALLAMSHIRE HOSPITAL   (United Kingdom)

^h YSBYTY GWYNEDD   (United Kingdom)

Author keywords

Quality of life; Systemic lupus erythematosus

Indexed keywords

ADULT; ARTICLE; BODY IMAGE; CLINICAL ARTICLE; CLINICAL ASSESSMENT TOOL; CONCURRENT VALIDITY; CONSTRUCT VALIDITY; CORRELATION ANALYSIS; CRONBACH ALPHA COEFFICIENT; DISCRIMINANT ANALYSIS; DISEASE ACTIVITY; DISEASE SPECIFIC HEALTH RELATED QUALITY OF LIFE; EMOTIONAL STABILITY; FATIGUE; FEMALE; HEALTH; HUMAN; PAIN; PLANNING; PRINCIPAL COMPONENT ANALYSIS; QUALITY OF LIFE INDEX; QUESTIONNAIRE; RELIABILITY; SHORT FORM 36; SYSTEMIC LUPUS ERYTHEMATOSUS; TEST RETEST RELIABILITY; THEMATIC ANALYSIS; VALIDATION STUDY;

ADULT; BODY IMAGE; CROSS-SECTIONAL STUDIES; DISABILITY EVALUATION; EMOTIONS; GREAT BRITAIN; HEALTH SURVEYS; HUMANS; LUPUS ERYTHEMATOSUS, SYSTEMIC; MIDDLE AGED; PAIN; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS; SEVERITY OF ILLNESS INDEX; SICKNESS IMPACT PROFILE;

EID: 34547752326     PISSN: 21514658     EISSN: 15290131     Source Type: Journal    
DOI: 10.1002/art.22881     Document Type: Article

References (29)

1. Petri M. Epidemiology of systemic lupus erythematosus. Best Pract Res Clin Rheumatol 2002;16:847-58.
2. Danchenko N, Satia JA, Anthony MS. Epidemiology of systemic lupus erythematosus: a comparison of worldwide disease burden. Lupus 2006;15:308-18.
3. Urowitz MB, Gladman DD, Abu-Shakra M, Farewell VT. Mortality studies in systemic lupus erythematosus: results from a single center. III. Improved survival over 24 years. J Rheumatol 1997;24:1061-5.
4. Isenberg D, Ramsey-Goldman R. Assessing patients with lupus: towards a drug responder index. Rheumatology (Oxford) 1999;38:1045-9.
5. 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.
6. Bombardier C, Gladman DD, Urowitz MB, Caron D, Chang CH, and the Committee on Prognosis Studies in SLE. Derivation of the SLEDAI: a disease activity index for lupus patients. Arthritis Rheum 1992;35:630-40.
7. Hay EM, Bacon PA, Gordon C, Isenberg DA, Maddison P, Snaith ML, et al. The BILAG index: a reliable and valid instrument for measuring clinical disease activity in systemic lupus erythematosus. Q J Med 1993;86:447-58.
8. Gladman D, Urowitz MB, Fortin PR, Isenberg D, Goldsmith C, Gordon C, et al, and the Systemic Lupus International Collaborating Clinics Group. Systemic Lupus International Collaborating Clinics conference on assessment of lupus flare and quality of life measures in SLE. J Rheumatol 1996;23:1953-5.
9. 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.
10. Tugwell P, Chambers L, Torrance G, Reynolds D, Wolfson M, Bennett K, et al, and the POHEM Workshop Group. The population health impact of arthritis. J Rheumatol 1993;20:1048-51.
11. Stoll T, Gordon C, Seifert B, Richardson K, Malik J, Bacon PA, 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.
12. Milligan SE, Hom DL, Ballou SP, Persse LJ, Svilar GM, Coulton CJ. An assessment of the Health Assessment Questionnaire functional ability index among women with systemic lupus erythematosus. J Rheumatol 1993;20:972-6.
13. Mitchell WD, Thompson TL 2nd. Psychiatric distress in systemic lupus erythematosus outpatients. Psychosomatics 1990;31:293-300.
14. Burckhardt CS, Archenholtz B, Bjelle A. Measuring the quality of life of women with rheumatoid arthritis or systemic lupus erythematosus: a Swedish version of the Quality of Life Scale (QOLS). Scand J Rheumatol 1992;21:190-5.
15. Lash AA. Quality of life in systemic lupus erythematosus. Appl Nursing Res 1998;11:130-7.
16. Tan EM, Cohen AS, Fries SF, Masi AT, McShane DJ, Rothfield NF, et al. The 1982 revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum 1982;25:1271-7.
17. Hochberg MC, for the Diagnostic and Therapeutic Criteria Committee of the American College of Rheumatology. Updating the American College of Rheumatology revised criteria for the classification of systemic lupus erythematosus [letter]. Arthritis Rheum 1997;40:1725.
18. Lincoln YS, Guba EG. Naturalistic inquiry. Beverley Hills: Sage; 1985.
19. Likert R. A technique for the development of attitude scales. Educ Psychol Meas 1952;12:313-5.
20. Symmons DP, Coppock JS, Bacon PA, Bresnihan B, Isenberg DA, Maddison P, et al, and Members of the British Isles Lupus Assessment Group (BILAG). Development and assessment of a computerized index of clinical disease activity in systemic lupus erythematosus. Q J Med 1988;69:927-37.
21. Isenberg DA, Gordon C, and the BILAG Group. From BILAG to BLIPS: disease activity assessment in lupus past, present and future. Lupus 2000;9:651-4.
22. 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.
23. Nunnally J. Psychometric theory. 2nd ed. New York: McGraw Hill; 1978.
24. Berzon R, Hays RD, Shumaker SA. International use, application and performance of health-related quality of life instruments. Qual Life Res 1993;2:367-8.
25. Grootscholten C, Ligtenberg G, Derksen RH, Schreurs KM, de Glas-Vos JW, Hagen EC, 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.
26. Leong KP, Kong KO, Thong BY, Koh ET, Lian TY, Teh CL, et al. Development and preliminary validation of a systemic lupus erythematosus-specific quality-of-life instrument (SLEQOL). Rheumatology (Oxford) 2005;44:1267-76.
27. Hale ED, Treharne GJ, Norton Y, Lyons AC, Douglas KM, Erb N, et al. "Concealing the evidence": the importance of appearance concerns for patients with systemic lupus erythematosus. Lupus 2006;15:532-40.
28. Yu EB, Shikiar R, Howard K, Kalunian KC, Petrillo J, Thompson C, et al. Validation of LUP-QOL: a lupus-specific measure of health-related quality of life (HRQL) [abstract]. Ann Rheum Dis 2006;65 Suppl II:601.
29. Moorthy LN, Peterson MG, Onel KB, Baratelli M, Haines K, Tabussi D, et al. Multi-center validation of simple measure of impact of lupus erythematosus in youngsters: a new quality of life measure in pediatric lupus [abstract]. Ann Rheum Dis 2006;65 Suppl II:446.