Disease-specific quality indicators, guidelines and outcome measures in scleroderma

Clinical and Experimental Rheumatology

Volumn 25, Issue 6 SUPPL. 47, 2007, Pages

  Valentini, Gabriele ^a   Cerinic, Marco Matucci ^b  

^a SECOND UNIVERSITY OF NAPLES   (Italy)

^b UNIVERSITY OF FLORENCE   (Italy)

Author keywords

Outcome measures; Quality of life; Systemic sclerosis

Indexed keywords

PENICILLAMINE;

ARTICLE; CLINICAL PRACTICE; CLINICAL PROTOCOL; DISABILITY; DISEASE SEVERITY; DRUG EFFICACY; HEALTH CARE QUALITY; HUMAN; OUTCOMES RESEARCH; PRACTICE GUIDELINE; PREDICTION; PRIORITY JOURNAL; QUALITY OF LIFE; SCLERODERMA; SCORING SYSTEM; SURVIVAL;

CLINICAL TRIALS AS TOPIC; HUMANS; PRACTICE GUIDELINES AS TOPIC; QUALITY INDICATORS, HEALTH CARE; SCLERODERMA, LOCALIZED; SENSITIVITY AND SPECIFICITY; TREATMENT OUTCOME;

EID: 36448950571     PISSN: 0392856X     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (40)

1. SEIBOLD JR: Scleroderma. In HARRIS ED JR, BUDD RC, FIRESTEIN GS et al. (Eds.): Kellley's Textbook of Rheumatology, 7th ed., Philadelphia, Elsevier Saunders, 2005: 1279-308.
2. VALENTINI G: The assessment of the patient with systemic sclerosis. Autoimmun Rev 2003; 2: 370-6.
3. PATRICK DL, DEYO RA: Generic and disease-specific measures in assessing health status and quality of life. Med Care 1989; 27 (3 Suppl.): S217-32.
4. FRIES JF, SPITZ P, KRAINES RG, HOLMAN HR: Measurement of patient outcome in arth-ritis. Arthritis Rheum 1980; 23: 137-45.
5. CLEMENTS PJ, WONG WK, HURWITZ EL et al.: Correlates of the disability index of the health assessment questionnaire: A measure of functional impairment in systemic sclerosis. Arthritis Rheum 1999; 42: 2372-80.
6. CLEMENTS PJ, WONG WK, HURWITZ EL et al.: The Disability Index of the Health Assessment Questionnaire is a predictor and correlate of outcome in the high-dose versus low-dose penicillamine in systemic sclerosis trial. Arthritis Rheum 2001; 44: 653-61.
7. SULTAN N, POPE JE, CLEMENTS PJ: Scleroderma Trials Study Group. The health assessment questionnaire (HAQ) is strongly predictive of good outcome in early diffuse scleroderma: Results from an analysis of two randomized controlled trials in early diffuse scleroderma. Rheumatology (Oxford) 2004; 43: 472-8.
8. CUOMO G, CHIAROLANZA I, RUOCCO L et al.: The Health Assessment Questionnaire-Disability Index in systemic sclerosis. Relationship with disease severity in distinct organ/systems (in preparation).
9. MEDSGER TA JR, BOMBARDIERI S, CZIRJAK L, SCORZA R, DELLA ROSSA A, BENCIVELLI W: Assessment of disease severity and prognosis. Clin Exp Rheumatol 2003; 21 (Suppl. 29): S42-6.
10. STEEN VD, MEDSGER TA JR: The value of the Health Assessment Questionnaire and special patient-generated scales to demonstrate change in systemic sclerosis patients over time. Arthritis Rheum 1997; 40: 1984-91.
11. SEREDNIKA K, SMITH AE, BLACK CM, DENTON CP: Using a self-reported functional score to assess disease progression in systemic sclerosis. Rheumatology 2007; 46: 1107-10.
12. FURST DE, KHANNA D, MATUCCI CERINIC M, SILMAN AJ, MERKEL PA, FOELDVARI I: Scleroderma - Developing measures of response. J Rheumatol 2005; 32: 2477-80.
13. KHANNA D, HAYS RD, PARK GS et al.: Development of the scleroderma gastrointestinal tract 1.0 (SSc-GIT 1.0) quality of life instrument - preliminary report Arthritis Rheum 2007 (in press).
14. DEL ROSSO A, BOLDRINI M, D'AGOSTINO D et al.: Health-related quality of life in systemic sclerosis as measured by the Short Form 36: relationship with clinical and biologic markers. Arthritis Rheum 2004; 51: 475-81.
15. KHANNA D, FURST DE, CLEMENTS PJ et al. for the Relaxin Study Group, Scleroderma Clinical Trials Consortium: Responsiveness of the SF-36 and the Health Assessment Questionnaire Disability Index in a systemic sclerosis clinical trial. J Rheumatol 2005; 32: 832-40.
16. KHANNA D, HAYS RD, FURST DE et al.: Assessment of SF-6D, a preference measure, in systemic sclerosis (abstract). Arthritis Rheum 2006; 52: S346.
17. WHITE B, BAUER EA, GOLDSMITH LA et al.: Guidelines for clinical trials in systemic sclerosis (scleroderma). I. Disease-modifying interventions. The American College of Rheumatology Committee on Design and Outcome in Clinical Trails in Systemic Sclerosis. Arthritis Rheum 1995; 38: 351-60.
18. FURST DE, CLEMENTS PJ, SEIBOLD JR: Treatment of systemic sclerosis with potentially disease-modifying drugs. In CLEMENTS PJ and FURST DE (Eds.): Systemic Sclerosis, 2nd ed., Philadelphia, Lippincott, Williams and Wilkins, 2004: 351-61.
19. MERKEL PA, CLEMENTS PJ, REVEILLE JD, SUAREZ-ALMAZOR ME, VALENTINI G, FURST DE: Current status of outcome measure development for clinical trials in systemic sclerosis. Report from OMERACT 6. J Rheumatol 2003; 30: 1630-47.
20. BOERS M, BROOKS P, STRAND CV, TUGWELL P: The OMERACT filter for outcome measures in rheumatology. J Rheumatol 1998; 25: 198-9.
21. CLEMENTS P, LECHENBRUCH P, SEIBOLD J et al.: Inter- and intra-observer variability of total skin thickness score (modified Rodnan TSS) in systemic sclerosis. J Rheumatol 1995; 22: 1281-5.
22. KHANNA D, FURST DE, HAYS RD et al.: Minimally important difference in diffuse systemic sclerosis: Results from the D-penicillamine study. Ann Rheum Dis 2006; 65: 1325-9.
23. GAZI H, POPE JE, CLEMENTS P et al.: Outcome measurements in scleroderma: Results from a delphi exercise. J Rheumatol 2007; 34: 501-9.
24. MERKEL PA, HERLYN K, MARTIN RW et al. for the Scleroderma Clinical Trials Consortium: Measuring disease activity and functional status in patients with scleroderma and Raynaud's phenomenon. Arthritis Rheum 2002; 46: 2410-20.
25. FURST D, KHANNA D, MATUCCI-CERINIC M et al.: Systemic sclerosis - Continuing progress in developing clinical measures of response. J Rheumatol 2007; 34: 1194-200.
26. KHANNA D, MERKEL PA: Outcome measures in systemic sclerosis: An update on instruments and current research. Curr Rheumatol Rep 2007; 9: 151-7.
27. KISSIN EY, SCHILLER AM, GELBARD RB et al.: Durometry for the assessment of skin disease in systemic sclerosis. Arthritis Rheum 2006; 55: 603-9.
28. HALLAN S, ASBERG A, LINDBERG M, JOHNSEN H: Validation of the Modification of Diet in Renal Disease formula for estimating GFR with special emphasis on calibration of the serum creatinine assay. Am J Kidney Dis 2004; 44: 939-40.
29. KHANNA D, LOVELL J, GIANNINI E: Development of a provisional core set of response measures for clinical trials of systemic sclerosis. Semin Ann Rheum Dis 2007 (in press).
30. MEDSGER TA JR, MASI AT: Survival with systemic sclerosis (scleroderma). Ann Intern Med 1971; 74: 714-21.
31. GIORDANO M, VALENTINI G, MIGLIARESI S, PICILLO U, VATTI M: Different antibody patterns and different prognoses in patients with scleroderma with various extent of skin sclerosis. J Rheumatol 1986; 13: 911-6.
32. FERRI C, VALENTINI G, COZZI F et al. and the Systemic Sclerosis Study Group of the Italian Society of Rheumatology (SIR-GSSSc): Systemic sclerosis: Demographic, clinical, and serologic features and survival in 1,012 Italian patients. Medicine (Baltimore) 2002; 81: 139-53.
33. BRYAN C, KNIGHT C, BLACH CM, SILMAN AJ: Prediction of five-year survival following presentation with scleroderma. Development of a sample model using three disease factors at first visit. Arthritis Rheum 1999; 42: 2600-5.
34. HUDSON M, STEELE R: Canadian Scleroderma Research Group (CSRG), Baron M: Update on indices of disease activity in systemic sclerosis. Semin Arthritis Rheum 2007, March 14 [E-pub ahead of print].
35. VALENTINI G, DELLA ROSSA A, BOMBARDIERI S et al.: European multicentre study to define disease activity criteria for systemic sclerosis. II. Identification of disease activity variables and development of preliminary activity indexes. Ann Rheum Dis 2001; 60: 592-8.
36. VALENTINI G, DELLA ROSSA A, BOMBARDIERI S et al.: European multicentre study to define disease activity criteria for systemic sclerosis. IV. Assessment of skin thickening by modified Rodnan Skin score. Ann Rheum Dis 2003; 62: 904-5.
37. DELLA ROSSA A, BOMBARDIERI S, VALENTINI G: Assessment of the discriminant validity of EScSG activity index (in preparation).
38. BOSELLO S, DE SANTIS M, TOLUSSO B, ZOLI A, FERRACCIOLI G: Tumor necrosis factor-alpha inhibitor therapy in erosive polyarthritis secondary to systemic sclerosis. Ann Intern Med 2005; 143: 918-20.
39. VALENTINI G, PAONE C, LA MONTAGNA G et al.: Low-dose intravenous cyclophosphamide in systemic sclerosis: An open prospective efficacy study in patients with early diffuse disease. Scand J Rheumatol 2006; 35: 35-8.
40. PAONE C, CHIAROLANZA I, CUOMO G et al.: Twelve-month azathioprine as maintenance therapy in early diffuse systemic sclerosis patients treated for 1-year with low dose cyclophosphamide pulse therapy. Clin Exp Rheumatol 2007; 25: 613-6.