The development and initial validation of the systemic lupus international collaborating clinics/American college of rheumatology damage index for systemic lupus erythematosus

Gladman, Dafna D.; Ginzler, Ellen M.; Goldsmith, Charles H.; Fortin, Paul R.; Liang, Matthew H.; Urowitz, Murray; Bacon, P. A.; Bombardieri, Stefano; Hanly, John G.; Hay, Elaine M; Isenberg, David; Jones, John Verrier; Kalunian, Kenneth; Maddison, Peter J.; Nived, Ola; Petri, Michelle; Richter, Martín; Sánchez‐Guerrero, Jorge; Snaith, M L; Sturfelt, Gunnar; Symmons, Deborah; Zoma, Asad

doi:10.1002/art.1780390303

Cited by 2,070 publications

(1,577 citation statements)

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“…However, the definition of "activity" is much more elusive in scleroderma, in which fibrosis is a more common finding than inflammation. Both sets of researchers have been working to refine a disease severity index (11,12). Althougb the greatest utility of a self-administered questionnaire would be in clinical trials, accurate measurement of disease status in the office setting could be extremely useful for the managing physician as well.…”

Section: Discussionmentioning

confidence: 99%

The value of the health assessment questionnaire and special patient‐generated scales to demonstrate change in systemic sclerosis patients over time

Steen

Medsger

1997

Arthritis & Rheumatism

409

320

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Objective. To determine the validity and usefulness of a modified Health Assessment Questionnaire (HAQ) for measurement of disease status and changes in disease status over time in patients with systemic sclerosis (SSc).Methods. Since 1985,1,250 patients attending the University of Pittsburgh Scleroderma Clinic have completed a modified HAQ annually. In addition to the standard HAQ questions about disability, the questionnaire includes visual analog scales (VAS) to evaluate SSc organ system symptoms, Raynaud's phenomenon, gastrointestinal (GI) tract and lung involvement, pain, and overall disease severity. In this study, the disability index (DI) (from the HAQ) and the VAS scores (on a 0-3 scale) were compared with various clinical and laboratory features recorded within 3 months of administration of the HAQ and VAS, using t-tests and Spearman's correlation tests.Results. The HAQ DI correlated directly with skin involvement, scleroderma heart or kidney disease, tendon friction rubs, hand contractures, and proximal muscle strength. Over time, the DI correlated with changes in skin score and was a good predictor of survival. There was a significant improvement in the DI during a 2-year time period in patients treated with D-penicillamine. The VAS for digital ulcers, GI symptoms, and lung symptoms correlated very closely with Submitted for publication September 9, 1996; accepted in revised form June 2, 1997. subjective and objective findings for these organ systems. The presence of new digital ulcers or improvement in digital ulcers showed significant associations with the Vascular scale, new GI symptoms or improvement in GI symptoms and institution of H,-blockers showed appropriate strong correlations with the GI scale, and changes in the forced vital capacity had an excellent correlation with the Lung scale (r = 0.58, P < 0.001). By Cox regression analysis, the HAQ DI was one of the best predictors of survival.Conclusion. These data provide convincing evidence that a self-administered questionnaire is an accurate and inexpensive tool to measure disease status changes in SSc. Prospective studies with the HAQ administered at regular intervals, as in controlled trials, should be performed to further assess the benefits and limitations of this instrument.

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Section: Discussionmentioning

confidence: 99%

The value of the health assessment questionnaire and special patient‐generated scales to demonstrate change in systemic sclerosis patients over time

Steen

Medsger

1997

Arthritis & Rheumatism

409

320

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“…At baseline, data on sociodemographic and clinical characteristics were collected by the investigators. Information about the course of SLE, such as the date of diagnosis (i.e., the date on which 4 of the 11 criteria were met), duration of disease, number of criteria met, and damage accrual according to the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (29), was extracted from each patient's medical chart.…”

Section: Methodsmentioning

confidence: 99%

Menopause hormonal therapy in women with systemic lupus erythematosus

Sánchez‐Guerrero

González-Pérez

Durand-Carbajal

et al. 2007

Arthritis & Rheumatism

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Objective. To evaluate the effects of menopause hormonal therapy on disease activity in women with systemic lupus erythematosus (SLE).Methods. We conducted a double-blind, randomized clinical trial involving 106 women with SLE who were in the menopausal transition or in early or late postmenopause. Patients received a continuoussequential estrogen-progestogen regimen (n ‫؍‬ 52) or placebo (n ‫؍‬ 54). Disease activity was assessed at baseline and at 1, 2, 3, 6, 9, 12, 15, 18, 21, and 24 months, according to the SLE Disease Activity Index (SLEDAI). The primary outcome measure was global disease activity, estimated by measuring the area under the SLEDAI curve. Secondary outcome measures included maximum SLEDAI score, change in SLEDAI score, incidence of lupus flares, median time to flare, medication use, and adverse events. Results were studied using intent-totreat analysis.Results. At baseline, demographic and disease characteristics were similar in both groups. Mean ؎ SD SLEDAI scores were 3.5 ؎ 3.3 and 3.1 ؎ 3.4 in the menopause hormonal therapy and placebo groups, respectively (P ‫؍‬ 0.57). Disease activity remained mild and stable in both groups throughout the trial. There were no significant differences between the groups in global or maximum disease activity, incidence or probability of flares, or medication use. Median time to flare was 3 months in both groups. Thromboses occurred in 3 patients who received menopause hormonal therapy and in 1 patient who received placebo. One patient in each group died during the trial due to sepsis.Conclusion. Menopause hormonal therapy did not alter disease activity during 2 years of treatment. However, an apparently increased risk of thrombosis seems to be a real threat in women with SLE who receive menopausal hormone therapy.

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“…Global SLE disease activity was measured by the SLEDAI-2K, a validated measure of disease activity in SLE (10). Cumulative damage is scored according to the SDI, a validated measure to assess damage in SLE (11,12). Organ damage was categorized as: 1) related to corticosteroids (cataracts, osteonecrosis, and osteoporosis), 2) possibly related to corticosteroids (cardiovascular, peripheral vascular, cerebrovascular accident, and diabetes mellitus), and 3) independent of corticosteroids (renal, pulmonary, gastrointestinal, skin, gonadal failure, and malignancy).…”

Section: Patient Selection and Clinical Assessmentsmentioning

confidence: 99%

Evolution of disease burden over five years in a multicenter inception systemic lupus erythematosus cohort

Urowitz¹,

Gladman²,

Ibanez³

et al. 2011

Arthritis Care & Research

131

104

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Objective. We describe disease activity, damage, and the accrual of key autoantibodies in an inception systemic lupus erythematosus (SLE) cohort. Methods. The Systemic Lupus International Collaborating Clinics (SLICC) International Research Network, comprising 27 centers from 11 countries, has followed an inception cohort of SLE patients yearly according to a standardized protocol. Of these patients, 298 were followed for a minimum of 5 years and constitute the study population. Disease activity was assessed using the SLE Disease Activity Index 2000 (SLEDAI-2K) and damage was assessed using the SLICC/American College of Rheumatology Damage Index (SDI). Antinuclear antibody (ANA), anti-DNA, and anticardiolipin antibody (aCL) levels and lupus anticoagulant were assessed yearly. Descriptive statistics were generated and repeated-measures general linear models were used to evaluate SLEDAI-2K and SDI over time between whites and nonwhites. Results. Of the 298 patients, 87% were women, 55% were white, 12% were African American, 14% were Asian, 16% were Hispanic, and 2% were categorized as "other." At enrollment, the mean age was 35.3 years, the mean SLEDAI-2K score was 5.9, and the mean disease duration was 5.5 months. Mean SLEDAI-2K scores decreased in the first year and then remained low. SLEDAI-2K scores were significantly lower at each year in whites compared to nonwhites. Mean SDI scores increased progressively over 5 years; there was no significant difference between whites and nonwhites. As expected, ANA positivity was high and anti-DNA positivity was relatively low at enrollment, and both increased over 5 years. Although lupus anticoagulant increased slightly over 5 years, aCL positivity did not. Conclusion. Disease activity in newly diagnosed patients decreases over their first 5 years, while damage increases. Antibody positivity ran variable courses over this period.

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The development and initial validation of the systemic lupus international collaborating clinics/American college of rheumatology damage index for systemic lupus erythematosus

Abstract: Objective. To develop and perform an initial validation of a damage index for systemic lupus erythematosus (SLE). Methods.A list of items considered to reflect damage in SLE was generated through a nominal group

Cited by 2,070 publications

References 2 publications

The value of the health assessment questionnaire and special patient‐generated scales to demonstrate change in systemic sclerosis patients over time

The value of the health assessment questionnaire and special patient‐generated scales to demonstrate change in systemic sclerosis patients over time

Menopause hormonal therapy in women with systemic lupus erythematosus

Evolution of disease burden over five years in a multicenter inception systemic lupus erythematosus cohort

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