Disease-specific patient reported outcome tools for systemic lupus erythematosus

Seminars in Arthritis and Rheumatism

Volumn 42, Issue 1, 2012, Pages 56-65

  Jolly, Meenakshi ^a   Pickard, A Simon ^c   Block, Joel A ^a   Kumar, Rajan B ^a   Mikolaitis, Rachel A ^a   Wilke, Caitlyn T ^b   Rodby, Roger A ^a   Fogg, Louis ^a   Sequeira, Winston ^b   Utset, Tammy O ^d   Cash, Thomas F ^e   Moldovan, Iona ^g   Katsaros, Emmanuel ^g   Nicassio, Perry ^h   Ishimori, Mariko L ^f   Kosinsky, Mark ^j   Merrill, Joan T ⁱ   Weisman, Michael H ^f   Wallace, Daniel J ^f  

^a RUSH UNIVERSITY   (United States)

^b Jr Hospital of Cook County   (United States)

^c UNIVERSITY OF ILLINOIS AT CHICAGO   (United States)

^d UNIVERSITY OF CHICAGO   (United States)

^e OLD DOMINION UNIVERSITY   (United States)

^f CEDARS SINAI MEDICAL CENTER   (United States)

^g LOMA LINDA UNIVERSITY SCHOOL OF MEDICINE   (United States)

^h UNIVERSITY OF CALIFORNIA   (United States)

ⁱ OKLAHOMA MEDICAL RESEARCH FOUNDATION   (United States)

^j QualityMetric Incorporated   (United States)

more..

Author keywords

Health measurement; Health outcomes; Patient reported outcome; Quality of life; Systemic lupus erythematosus

Indexed keywords

ADULT; ARTICLE; BODY IMAGE; CLINICAL ARTICLE; COGNITION; CONCEPTUAL FRAMEWORK; CONSTRUCT VALIDITY; CONTENT VALIDITY; COPING BEHAVIOR; CRITERION RELATED VALIDITY; DISEASE ACTIVITY; DISEASE DURATION; EMOTIONALITY; ETHNIC DIFFERENCE; FEMALE; HEALTH STATUS; HUMAN; INTERNAL CONSISTENCY; LUPUS PATIENT REPORTED OUTCOME TOOL; MALE; MEDICAL RESEARCH; MOTIVATION; OUTCOME ASSESSMENT; PAIN ASSESSMENT; PATIENT SATISFACTION; PHYSICAL ACTIVITY; PRIORITY JOURNAL; PSYCHOMETRY; QUALITY OF LIFE; SCORING SYSTEM; SELF REPORT; SEX DIFFERENCE; SHORT FORM 36; SOCIAL SUPPORT; SYMPTOM; SYSTEMIC LUPUS ERYTHEMATOSUS; TEST RETEST RELIABILITY; UNITED STATES; VALIDATION STUDY;

ACTIVITIES OF DAILY LIVING; FEEDBACK; FEMALE; HEALTH STATUS; HUMANS; LUPUS ERYTHEMATOSUS, SYSTEMIC; MALE; OUTCOME ASSESSMENT (HEALTH CARE); PAIN; QUALITY OF LIFE; REPRODUCIBILITY OF RESULTS; SELF REPORT; TREATMENT OUTCOME; UNITED STATES;

EID: 84864084898     PISSN: 00490172     EISSN: 1532866X     Source Type: Journal    
DOI: 10.1016/j.semarthrit.2011.12.005     Document Type: Article

References (50)

1. Guidance for Industry: Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims 2008, Food and Drug Administration, Food and Drug Administration's. http://www.fda.gov/downloads/drugs.GuidanceComplianceRegulatoryInformation/Guidlines/UCM193282.PDF.
2. Strand V., Gladman D., Isenberg D., Petri M., Smolen J., Tugwell P. Endpoints: consensus recommendations from OMERACT IV. Outcome measures in rheumatology. Lupus 2000, 9(5):322-327.
3. Holmes S., Dickerson J. The quality of life design and evaluation of a self-assesment instrument for use with cancer patients. Int J Nurs Stud 1987, 24(1):15-24.
4. Bergner M. Quality of life, health status and clinical research. Med Care 1989, 27:S148-S156.
5. Gordon C., Clarke A.E. Quality of life and economic evaluation in SLE clinical trials. Lupus 1999, 8(8):645-654.
6. 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(2):490-497.
7. Smolen J.S., Strand V., Cardiel M., Edworthy S., Furst D., Gladman D., et al. Randomized clinical trials and longitudinal observational studies in systemic lupus erythematosus: consensus on a preliminary core set of outcome domains. J Rheumatol 1999, 26(2):504-507.
8. Burckhardt C.S., Archenholtz B., Bjelle A. Quality of life of women with systemic lupus erythematosus: a comparison with women with rheumatoid arthritis. J Rheumatol 1993, 20(6):977-981.
9. Grootscholten C., Ligtenberg G., Derksen R.H., Schreurs K.M., Glas-Vos J.W., Hagen E.C., 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(6):635-644.
10. Wiginton K.L. Illness representations: mapping the experience of lupus. Health Educ Behav 1999, 26(4):443-453. [see comment].
11. Teh S.L., McElhone K., Bruce I., et al. Development and validation of a disease specific quality of life measure for adults with systemic lupus erythematosus, the LupusQoL. Arthritis Rheum 2005, 52(s):s188.
12. Leong K.P., Kong K.O., Thong B.Y., Koh E.T., Lian T.Y., Teh C.L., et al. Development and preliminary validation of a systemic lupus erythematosus-specific quality-of-life instrument (SLEQOL). Rheumatology 2005, 44(10):1267-1276.
13. Archenholtz B., Burckhardt C.S., Segesten K. Quality of life of women with systemic lupus erythematosus or rheumatoid arthritis: domains of importance and dissatisfaction. Qual Life Res 1999, 8(5):411-416.
14. Spilker B., Reviki D.A. Taxonomy of quality of life. Quality of life and pharmacoeconomics in clinical trials 1996, 25-31. Lippincott-Raven, Philadelphia. B. Spilker (Ed.).
15. Doward L.S., McKenna S.P., Whalley D., Tennant A., Griffiths B., Emery P., et al. The development of the L-QoL: A quality of life instrument specific to systemic lupus erythematosus. Ann Rheum Dis 2008, 59(6):84-88.
16. McElhone K., Abbott J., Shelmerdine J., Bruce I.N., Ahmad Y., Gordon C., et al. Development and validation of a disease-specific health-related quality of life measure, the LupusQol, for adults with systemic lupus erythematosus. Arthritis Rheum 2007, 57(6):972-979.
17. Toloza S.M., Jolly M., Alarcon G.S. Quality-of-life measurements in multiethnic patients with systemic lupus erythematosus: cross-cultural issues [Review]. Curr Rheumatol Rep 2010, 12(4):237-249.
18. Hays R.D., Anderson R., Revicki D. Psychometric considerations in evaluating health-related quality of life measures. Qual Life Res 1993, 2:441-449.
19. The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc Sci Med 1998, 46(12):1569-1585.
20. Hochberg M.C. Updating the American College of Rheumatology revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum 1725, 40(9):1725.
21. Drennan J. Cognitive interviewing: Verbal data in the design and pretesting of Questionnaires. J Adv Nurs 2003, 42(1):57-63.
22. Juniper E.F., Guyatt G.H., Jaeschke R. How to develop and validate a new health related quality of life instrument. Quality of life and pharmacoeconomics in clinical trials 1996, 49-55. Lippincott-Raven, Philadelphia. B. Spiker (Ed.).
23. McColl E. Developing Questionnaires. Assessing quality of life in clinical trials 2005, 9-21. Oxford University Press, USA. P. Fayers, R. Hays (Eds.).
24. Kniffen J.D., Kincaid J.P., Lang S., Thomas M. Computer aids for authoring technical text written in controlled English. Proceedings of the Human Factors Society 1989, 33:1134-1138.
25. Marx R.G., Bombardier C., Hogg-Johnson S., Wright J.G. Clinimetric and psychometric strategies for development of a health measurement scale. J Clin Epidemiol 1999, 52(2):105-111.
26. Bond T.G., Fox C.M. Applying the Rasch model: fundamental measurement in the human sciences 2001, Lawrence Erlbaum Associates, New Jersey.
27. Bond T.G., Fox C.M. Important Principles of Measurement Made Explicit. Applying the Rasch Model 2001, 9-19. Lawrence Erlbaum Associates, New Jersey. T.G. Bond, C.M. Fox (Eds.).
28. Buyon J.P., Kalunian K., Skovron M.L., Petri M., Lahita R., Merrill J., et al. Can women with systemic lupus erythematosus safely use exogenous estrogens?. J Clin Rheumatol 1995, 1(4):205-212.
29. EuroQoL-a new facility for the measurement of health related quality of life. Health Policy 1990, 16:199-208. EuroQoL Group.
30. ©): validity and reliability. Arthritis Rheum 2008, 58(9s):S805.
31. Ware J.E. The SF-36 Health Survey. Quality of life and pharmacoeconomics in clinical trials 1996, 337-345. Lippincott-Raven, Philadelphia (PA). B. Spiker (Ed.).
32. Ruperto N., Hanrahan L.M., Alarcon G.S., Belmont H.M., Brey R.L., Brunetta P., et al. International Concensus for a definition of disease flare in lupus. Lupus 2011, 20(5):453-462.
33. Petri M., Kim M.Y., Kalunian K.C., Grossman J., Hahn B.H., Sammaritano L.R., et al. Combined oral contraceptives in women with systemic lupus erythematosus. N Engl J Med 2005, 353(24):2550-2558.
34. Stoll T., Stucki G., Malik J., Pyke S., Isenberg D.A. Further validation of the BILAG disease activity index in patients with systemic lupus erythematosus. Ann Rheum Dis 1996, 55(10):756-760.
35. Stoll T., Seifert B., Isenberg D.A. 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(3):248-254.
36. Moorthy L.N., Peterson M.G., Baratelli M.J., Hassett A.L., Lehman T.J., Cuttica R.J., et al. Preliminary cross-cultural adaptation of a new pediatric health-related quality of life scale in children with systemic lupus erythematosus: an international effort. Lupus 2010, 19(1):83-88.
37. Toloza S.M., Jolly M., Alarcon G.S. Quality-of-life measurements in multiethnic patients with systemic lupus erythematosus: cross-cultural issues. Curr Rheumatol Rep 2010, 12(4):237-249. [Review].
38. Toloza S.M., Jolly M., Alarcon G.S. Quality-of-life measurements in multiethnic patients with systemic lupus erythematosus: cross-cultural issues [Review]. Curr Rheumatol Rep 2010, 12(4):237-249.
39. Jolly M., Utset T.O. Can disease specific measures for systemic lupus erythematosus predict patients health related quality of life?. Lupus 2004, 13(12):924-926.
40. Alarcon G.S., McGwin G., Brooks K., Roseman J.M., Fessler B.J., Sanchez M.L., et al. Systemic lupus erythematosus in three ethnic groups. XI. Sources of discrepancy in perception of disease activity: a comparison of physician and patient visual analog scale scores. Arthritis Rheum 2002, 47(4):408-413.
41. McElhone K., Abbott J., Teh S.L. A review of health related quality of life in systemic lupus erythematosus. Lupus 2006, 15:633-643.
42. Moses N., Wiggers J., Nicholas C., Cockburn J. Development and psychometric analysis of the systemic lupus erythematosus needs questionnaire (SLENQ). Qual Life Res 2007, 16(3):461-466.
43. Greenwood K.M., Lederman L., Lindner H.D. Self-reported sleep in systemic lupus erythematosus. Clin Rheumatol 2008, 27(9):1147-1151.
44. Moses N., Wiggers J., Nicholas C., Cockburn J. Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus. Patient Educ Counsel 2005, 57(1):30-38.
45. Tench C.M., McCurdie I., White P.D., D'Cruz D.P. The prevalence and associations of fatigue in systemic lupus erythematosus. Rheumatology 2000, 39(11):1249-1254.
46. Hale E.D., Treharne G.J., Norton Y., Lyons A.C., Douglas K.M., Erb N., et al. 'Concealing the evidence': the importance of appearance concerns for patients with systemic lupus erythematosus. Lupus 2006, 15(8):532-540.
47. Wiginton K.L. Illness representations: mapping the experience of lupus. Health Educ Behav 1999, 26(4):443-453.
48. Bauernfeind B., Aringer M., Prodinger B., Kirchberger I., Machold K., Smolen J., et al. Identification of relevant concepts of functioning in daily life in people with systemic lupus erythematosus: A patient Delphi exercise. Arthritis Rheum 2009, 61(1):21-28.
49. Toloza S.M., Sequeira W., Jolly M. Treatment of lupus: impact on quality of life. Curr Rheum Rep 2011, 13(4):324-337. [Review].
50. Touma Z., Gladman D.D., Ibanez D., Urowitz M.B. Is there an advantage over SF-36 with a quality of life measure that is specific to systemic lupus erythematosus?. J Rheumatol 2011, 38(9):1898-1905.