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  • Medizin  (2)
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  • 1
    In: Annals of the Rheumatic Diseases, BMJ, Vol. 78, No. 6 ( 2019-06), p. 807-816
    Kurzfassung: We sought to develop the first Damage Index (DI) in systemic sclerosis (SSc). Methods The conceptual definition of ‘damage’ in SSc was determined through consensus by a working group of the Scleroderma Clinical Trials Consortium (SCTC). Systematic literature review and consultation with patient partners and non-rheumatologist experts produced a list of potential items for inclusion in the DI. These steps were used to reduce the items: (1) Expert members of the SCTC (n=331) were invited to rate the appropriateness of each item for inclusion, using a web-based survey. Items with 〉 60% consensus were retained; (2) Using a prospectively acquired Australian cohort data set of 1568 patients, the univariable relationships between the remaining items and the endpoints of mortality and morbidity (Physical Component Summary score of the Short Form 36) were analysed, and items with p 〈 0.10 were retained; (3) using multivariable regression analysis, coefficients were used to determine a weighted score for each item. The DI was externally validated in a Canadian cohort. Results Ninety-three (28.1%) complete survey responses were analysed; 58 of 83 items were retained. The univariable relationships with death and/or morbidity endpoints were statistically significant for 22 items, with one additional item forced into the multivariable model by experts due to clinical importance, to create a 23-item weighted SCTC DI (SCTC-DI). The SCTC-DI was predictive of morbidity and mortality in the external cohort. Conclusions Through the combined use of consensus and data-driven methods, a 23-item SCTC-DI was developed and retrospectively validated.
    Materialart: Online-Ressource
    ISSN: 0003-4967 , 1468-2060
    RVK:
    Sprache: Englisch
    Verlag: BMJ
    Publikationsdatum: 2019
    ZDB Id: 1481557-6
    Standort Signatur Einschränkungen Verfügbarkeit
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  • 2
    In: The Journal of Rheumatology, The Journal of Rheumatology, Vol. 50, No. 4 ( 2023-04), p. 519-525
    Kurzfassung: To assess whether patient and physician global assessment of gastrointestinal tract (GIT) disease in systemic sclerosis (SSc) are associated with a meaningful change in disease status. Methods One hundred forty-three participants from the Australian Scleroderma Cohort Study were recruited to this study. Using logistic regression analysis, we evaluated the relationship between patient-reported and physician-assessed GIT disease status and symptoms, measures of health-related quality of life (36-item Short Form Health Survey [SF-36]) and GIT disease severity, measured by th e Scleroderma Clinical Trials Consortium UCLA Gastrointestinal Tract 2.0 (GIT 2.0) score. Results Patient-reported worsening of GIT symptoms in the month preceding assessment was significantly associated with more severe GIT disease (odds ratio [OR] 6.14, P 〈 0.01) and progressive worsening GIT disease severity as measured by the GIT 2.0 score (OR 45.98, P 〈 0.01). The new onset of reflux was the only specific symptom associated with patient-reported GIT disease activity (OR 2.98, P = 0.04). Physician-assessed GIT disease activity was not significantly associated with higher GIT 2.0 scores or increasing severity of disease. Patient-reported and physician-assessed GIT activity was not associated with SF-36 scores. Conclusion In the absence of objective measures of GIT disease activity in SSc, patient-reported symptoms of GIT disease could be used to indicate disease activity and should merit consideration for inclusion in a multisystem disease activity index.
    Materialart: Online-Ressource
    ISSN: 0315-162X , 1499-2752
    RVK:
    Sprache: Englisch
    Verlag: The Journal of Rheumatology
    Publikationsdatum: 2023
    Standort Signatur Einschränkungen Verfügbarkeit
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