Outcome in SLE patients should include assessment of disease activity and chronic damage and also measurement of health-related quality of life and the economic impact of the disease. This paper reviews the methods available for doing this and the results of existing studies in SLE patients.
Gladman DD , Goldsmith CH , Urowitz MB et al. Sensitivity to change of 3 systemic lupus erythematosus disease activity indices:international validation . J Rheumatol1994;21: 1468-1471 .
2.
Urowitz MB , Gladman DD . Measures of disease activity and damage in SLE . Baillieres Clin Rheumatol1998;12: 405-413 .
3.
Gladman D , 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 Rheum1996;39: 363-369 .
4.
Wolfe F . Health-status questionnaires . Rheum Dis Clin North Am1995;21: 445-464 .
5.
Gladman D , Urowitz M , Fortin P et al. Systemic lupus international collaborating clinics conference on assessment of lupus flare and qualityof life measures in SLE . J Rheumatol1996;23: 1953-1955 .
6.
Isenberg D , Gladman D . Assessing lupus [letter] . Arthritis Rheum1998;41: 2276-2276 .
7.
Strand V , Gladman D , Isenberg D et al. Outcome measures to be used in clinical trials in systemic lupus erythematosus . J Rheumatol1999;26: 490-497 .
8.
Smolen JS , Strand V , Cardiel M et al. Randomized clinical trials and longitudinal observational studies in systemic lupus erythematosus:consensus on a preliminary core set of outcome domains . J Rheumatol1999;26: 504-507 .
9.
Clarke AE , Esdaile JM , Bloch DA et al. A Canadian study of the total medical costs for patients with systemic lupus erythematosus and the predictors of costs . Arthritis Rheum1993;36: 1548-1549 .
10.
Karlson EW , Daltroy LH , Lew RA et al. The relationship of socioeconomic status, race, and modifiable risk factors to outcomes in patients with systemic lupus erythematosus . Arthritis Rheum1997;40: 47-56 .
11.
Dobkin PL , Fortin PR , Joseph L et al. Psychosocial contributors to mental and physical health in patients with systemic lupus erythematosus . ArthritisCare Res1998;11: 23-31 .
12.
DaCosta D , Dobkin PL , Pinard L et al. The role of stress in functional disability among women with systemic lupus erythematosus:a prospective study . Arthritis Care Res1999;12: 112-119 .
13.
Gold MR , Siegel JE , Russell LB , Weinstein MC . Cost-effectiveness in Health and Medicine. Oxford University Press;New York1996.
14.
Russell LB , Gold MR , Siegel JE et al The role of cost-effectiveness analysis in health and medicine . JAMA1996;276: 1172-1177 .
15.
Weinstein MC , Siegel JE , Gold MR et al. Recommendations of the panel on cost-effectiveness in health and medicine . JAMA1996;276: 1253-1258 .
16.
Siegel JE , Weinstein MC , Russell LB , Gold MR . Recommendations fo reporting cost-effectiveness analyses . JAMA1996;276: 1339-1341 .
17.
Hodgson TA , Meiners MR . Cost-of-illness methodology:a guide to current practices and procedures . Milbank Mem Fund Q1982;60: 429-462 .
18.
Luce BR , Elixhauser A . Estimating costs in the economic evaluation of medical technologies . Int J Technol Assess Health Care1990;6: 57-75 .
19.
Drummond MF , Stoddart GL , Torrance GW . Methods for the Economic Evaluation of Health Care Programmes. Oxford University Press, Oxford1987.
20.
Sloan FA (ed). Valuing Health Care:Costs, Benefits and Effectiveness of Pharmaceuticals and Other Medical Technologies. Cambridge UniversityPress, Cambridge1995.
21.
Hochberg MC , Sutton JD . Physical-disability and psychosocial dysfunction insystemic lupus erythematosus . J Rheumatol1988;15: 959-964 .
22.
Milligan SE , Hom DL , Ballou SP et al. An assessment of the Health Assessment Questionnaire functional ability index among women with systemic lupus erythematosus . J Rheumatol1993;20: 972-976 .
23.
Gladman DD , Urowitz MB , Ong A et al. A comparison of five health status instruments in patients with systemic lupus erythematosus (SLE) . Lupus1996;5: 190-195 .
24.
Burckhardt CS , Archenholtz B , Bjelle A . Quality of life of women with systemic lupus erythematosus:a comparison with women with rheumatoid arthritis .J Rheumatol1993;20: 977-981 .
25.
Abu Shakra M , Mader R , Langevitz P et al. Quality of life in systemic lupuserythematosus:a controlled study . JRheumatol1999;26: 306-309 .
26.
Zigmond AS , Snaith RP . The hospital anxiety and depression scale . Acta Psychiatr Scand1983;67: 361-370 .
27.
Omdal R , Husby G , Mellgren SI . Mental health status in systemic lupus erythematosus . Scand J Rheumatol1995;24: 142-145 .
28.
Hurst NP , Kind P , Ruta D et al. Measuring health-related quality of life inrheumatoid arthritis:validity, responsiveness and reliability of EuroQol(EQ-5D) . Br J Rheumatol1997;36: 551-559 .
29.
Wolfe F , Hawley DJ . Measurement of the quality of life in rheumatic disorders using the euroqol . Br J Rheumatol1997;36: 786-793 .
30.
Krupp LB , Larocca NG , Muir J , Steinberg AD . A study of fatigure in systemiclupus erythematosus . J Rheumatol1990;17: 1450-1452 .
31.
Middleton GD , McFarlin JE , Lipsky PE . The prevalence and clinical impact ofbromyalgia in systemic lupus erythematosus . Arthritis Rheum1994;37: 1181-1188 .
32.
Pistiner M , Wallace DJ , Nessim S et al. Lupus erythematosus in the 1980s survey of 570 patients . Semin Arthritis Rheum1991;21: 55-64 .
33.
Gladman DD , Urowitz MB , Gough J , MacKinnon A . Fibromyalgia is a major contributor to quality of life in lupus . J Rheumatol1997;24: 2145-2148 .
34.
Utset TO , Golden M , Siberry G et al. Depressive symptoms in patients with systemic lupus erythematosus:association with central nervous system lupus and Sjogren's syndrome . J Rheumatol1994;21: 2039-2045 .
35.
Krupp LB , Larocca NG , Muirnash J , Steinberg AD . The fatigue severity scale — application to patients with multiple sclerosis and systemic lupus erythematosus . Arch Neurol1989;46: 1121-1123 .
36.
Chalder T , Berelowitz G , Pawlikowska T et al. Development of a fatigue scale . J Psychosom Res1993;37: 147-153 .
37.
Thomas E , Hay EM , Hajeer A , Silman AJ . Sjogren's syndrome:a community-based study of prevalence and impact . Br J Rheumatol1998;37: 1069-1076 .
38.
Fitzpatrick R , Ziebland S , Jenkinson C , Mowat A . A comparison of the sensitivity to change of several health status instruments in rheumatoid arthritis . J Rheumatol1993;20: 429-436 .
39.
Valladolid GR , Aguado AG , Criado AB et al. Prevalence of psychiatric disturbances and psychopathologic status in patients with systemic lupus erythematosus . Rev Clin Esp1998;198: 61-65 .
40.
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 Rheumatol1997;24: 1608-1614 .
41.
Fortin PR , Abrahamowicz M , Neville C et al. Impact of disease activity and cumulative damage on the health of lupus patients . Lupus1998;7: 101-107 .
42.
Thumboo J , Fong KY , Ng TP et al. Validation of the MOS SF-36 for quaity fo life assessment of patients with systemic lupus erythematosus in Singapore .J Rheumatol1999;26: 97-102 .
43.
Gladman DD , Urowitz MB , Ong A et al. Lack of correlation among the 3 outcomes describing SLE:disease activity, damage and quality of life . Clin Exp Rheumatol1996;14: 305-308 .
44.
Stoll T , Stucki G , Malik J et al. Further validation of the BILAG disease activity index in patients with systemic lupus erythematosus . Ann Rheum Dis1996;55: 756-760 .
45.
Stoll T , Stucki G , Malik J et al. Association of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology DamageIndex with measures of disease activity and health status in patients with systemic lupus erythematosus . J Rheumatol1997;24: 309-313 .
46.
Gordon C , Exley AR , Clay C et al. Changes in SF36 scors in SLE patients with change in disease activity measured by the BILAG index . Arthritis Rheum197;40: 487-487 .
47.
Taylor J , Skan J , Erb B et al. Lupus patients with fatigue:is there a linkwith the bromyalgia syndrome?Arthritis Rheum1998;41: 1797-1797 .
48.
Sutcliffe N , Clarke AE , Levinton C et al. Determinants of health status in patients with SLE . J Rheumatol1999. In press.
49.
Moore A , Petri MA , Manzi S et al. The use of alternatiave medical therapiesin patients with systemic lupus erythematosus (SLE) . Arthritis Rheum1998;41 (9 suppl): S133-S133 .
50.
Ramos-Remus C , Gamez-Nava JI , Gonzalez-Lopez L , Suarez-Almazor ME.Use of alternative medicine in a consecutive sample of patients with systemic lupus erythematosus (letter) . J Rheumatol1997;24: 12-12 .
51.
Clarke AE , Petri MA , Manzi S et al. An international perspective on the well-being and health care costs for patients with systemic lupus erythematosus . J Rheumatol1999;26: 1500-1511 .
52.
St Pierre Y , Penrod J , Petri M et al. Underestimating the value of rheumatic diseases:Assessing the costs of women with lupus (SLE) . Arthritis Rheum1998;41 (9): S221-S221 .
53.
Gabriel SE , Crowson CS , Campion ME , O'Fallon WM.Direct medical costs unique to people with arthritis . J Rheumatol1997;24: 719-725 .
54.
Lanes SF , Lanza LL , Radensky PW et al. Resource utilization and cost of care for rheumatoid arthritis and osteoarthritis in a managed care setting . Arthritis Rheum1997;40: 1475-1481 .
55.
Clarke AE , Bloch DA , Danoff DS , Esdaile JM . Decreasing costs and improving outcomes in SLE:using regresson trees to develop health policy . J Rheum1994;21: 2246-2253 .
56.
Lacaille D , Clarke AE , Bloch DA et al. The impact of disease activity and disease severity on short-term costs of systemic lupus erythematosus . J Rheum1994;21: 448-453 .
57.
Gironomi G , Clarke AE , Hamilton VH et al. Why health care costs more in the US:comparing health care expenditures between systemic lupus erythematosus patients in Stanford and Montreal . Arthritis Rheum1996;39: 979-987 .
58.
Clarke AE , Zowall H , Levinton C et al. Direct and indirect medical costs incurred by Canadian patients with rheumatoid arthritis:a twelve year study . J Rheumatol1997;24: 1051-1060 .
59.
Clarke AE , Levinton C , Joseph L et al. Predicting the short term direct medical costs incurred by patients with rheumatoid arthritis . J Rheumatol1999;26: 1068-1075 .
60.
Clarke AE . Arthritis patient education:How economic evaluations can inform health policy . Can J Aging1997;Suppl: 162-176 .
61.
Yelin E . The costs of rheumatoid arthritis:absolute, incremental, and marginal estimates . J Rheumatol1996;23: 47-51 .
62.
Van Jaaarsveld CHM , Jacobs JWG , Schrijvers AJP et al. Direct cost of rheumatoid arthritis during the first six years:a cost-of-illness study . Br J Theumatol1998;37: 837-847 .
63.
Meenan RF , Yelin EH , Henke CJ et al. The costs of rheumatoid arthritis:a patient-oriented study of chronic disease costs . Arthritis Rheum1978;21: 827-833 .
64.
Finn D , Allen P , Hoffstein P et al. Economic costs of systemic lupus erythematosus:a five year prospective study . Arthritis Rheum1993;36 (9 Suppl): S192-S192 .
65.
Lubeck DP , Spitz PW , Fries JF et al. A multicenter study of annual health service utilization and costs in rheumatoid arthritis . Arthritis Rheum1986;29: 488-493 .
66.
Liang MH , Larson M , Thompson M et al. Costs and outcomes in rheumatoid arthritis and osteoarthritis . Arthritis Rheum1984;27: 522-529 .
67.
Yelin E , Henke CJ , Epstein WV . The work dynamics of the person with rheumatoid arthritis . Arthritis Rheum1987;30: 507-512 .
68.
Allaire SH , Meenan RF , Anderson JJ . The impact of rheumatoid arthritis on the household work performance of women . Arthritis Rheum1991;34: 669-678 .
69.
Felts W , Yelin E . The economic impact of the rheumatic diseases in the United States . J Rheumatol1989;16: 867-884 .
70.
Yelin E , Callahan LF , for the National Arthritis Data Work Group . The economic cost and social and psychological impact of musculoskeletal conditions .Arthritis Rheum1995;38: 1351-1362 .
71.
Badley EM , Rasooly I , Webster GK . Relative importance of musculoskeletal disorders as a cause of chronic health problems, disability, and health care utilizationndings from the 1990 Ontario Health Survey . J Rheumatol1994;21: 505-514 .
Jacobs J , Keyserling JA , Britton M et al. The total cost of care and the use of pharmaceuticals in the management of rheumatoid arthritis:the medicalprogram . J Clin Epidemiol1988;41: 215-223 .
74.
McIntosh E . The cost of rheumatoid arthritis . Br J Rheumatol1996;35: 781-790 .
75.
Finkler SA.The distinction between costs and charges . Ann Intern Med1982;96: 102-109 .
76.
Canadian Coordinating Office for Health Technology . Assessment Guidelines for Economic Evaluation of Pharmaceuticals. Ontario. Canadian Coordinating Offfce for Health Technology Assessment:Ottawa2nd edition:1997;pp 1-85.
77.
Baladi J-F.A Guidance Document for the Costing Process. Ontario. Canadian Coordinating Office for Health Technology Assessment:Ottawa1996.
78.
Cain G . The Economic Analysis of Labor Market Discrimination:A Survey. In: Ashenfelter OC and Layard R (eds). Handbook of Labor Economics. Elsevier Science;Amsterdam1986 pp 693-785.
79.
McCarthy S and Sallot J.Pay equity bill at least $3-billion . The Globe andMailJuly 30, 1998.
80.
Goldin C.Understanding the Gender Gap:An Economic History of American Women. Oxford University Press:New York1990.
81.
Koopmanschap MA , Rutten FFH , Van Ineveld BM , van Roijen L.The friction cost method for measuring indirect costs of disease . J Health Econom1995;14: 171-189 .
82.
Earnings of Men and Women, 1995. Statistics Canada:Ottawa1997;13-217.
83.
Households' Unpaid Work:Measurement and Valuation. 13-603E. Statistics Canada, Minister of Industry:Ottawa1995.
84.
Jackson C. The Value of Household Work in Canada, 1986. Canadian Economic Observer 11-010. Statistics Canada, Minister of Industry, Ottawa 1992.
85.
McInnes PM , Schuttinga J , Sanslone WR et al. The economic impact of treatment of severe lupus nephritis with prednisone and intravenous cyclophosphamide . Arthritis Rheum1994;37: 1000-1006 .
