Natural history of systemic sclerosis and the assessment of disease activity, severity, functional status, and psychologic well-being

2003 ◽  
Vol 29 (2) ◽  
pp. 255-273 ◽  
Author(s):  
Thomas A Medsger
Keyword(s):  
Systemic Sclerosis ◽  
Natural History ◽  
Disease Activity ◽  
Functional Status ◽  
Well Being ◽  
History Of ◽  
Assessment Of Disease Activity

scholarly journals The impact of extra-musculoskeletal manifestations on disease activity, functional status, and treatment patterns in patients with axial spondyloarthritis: results from a nationwide population-based study

2020 ◽  
Vol 12 ◽  
pp. 1759720X2097261
Author(s):  
Imke Redeker ◽  
Britta Siegmund ◽  
Kamran Ghoreschi ◽  
Uwe Pleyer ◽  
Johanna Callhoff ◽  
...  
Keyword(s):  
Disease Activity ◽  
Functional Status ◽  
Axial Spondyloarthritis ◽  
Population Based ◽  
Treatment Patterns ◽  
Health Insurance Data ◽  
History Of ◽  
Musculoskeletal Manifestations ◽  
Disease Modifying ◽  
Insurance Data

Objective: The aim of this study was to investigate the association of extra-musculoskeletal manifestations (EMMs) with disease activity, functional status, and treatment patterns in a large population-based cohort of patients with axial spondyloarthritis (axSpA). Methods: A stratified random sample of patients with axSpA, drawn from health insurance data, received a survey on disease-related characteristics including history (ever presence) of the following EMMs: inflammatory bowel disease (IBD), psoriasis (PSO), and anterior uveitis (AU). Survey data were linked to health insurance data, gathering additional information on current occurrence (within one year) of EMMs and drug prescriptions. Separate multivariable linear regression models were calculated to determine the association of EMMs with disease activity (Bath Ankylosing Spondylitis Disease Activity Index), and functional status (Bath Ankylosing Spondylitis Functional Index) after adjustment for relevant parameters, including treatment. Results: A total of 1729 patients with axSpA were included in the analyses (response: 47%; mean age: 56 years; 46% female) of whom 6% (9%) had current (ever) IBD, 10% (15%) had current (ever) PSO, and 9% (27%) had current (ever) AU. Ever presence of IBD and history of PSO were significantly associated with higher level of disease activity. Ever presence of PSO was also associated with higher level of functional impairment, whereas current AU was significantly associated with lower disease activity. Patients with current IBD or PSO received more frequently biological and conventional synthetic disease-modifying anti-rheumatic drugs as well as systemic steroids. AU was associated with a higher use of conventional synthetic disease-modifying anti-rheumatic drugs only. Conclusion: Disease activity is higher in patients with axSpA with history of IBD or history of PSO. Functional impairment is also higher in patients with axSpA with history of PSO. The presence of different EMMs was associated with different treatment patterns in axSpA.

scholarly journals Efficacy of Lumiracoxib in Osteoarthritis: A Review of Nine Studies

2005 ◽  
Vol 33 (1) ◽  
pp. 21-41 ◽  
Author(s):  
F Berenbaum ◽  
J Grifka ◽  
JP Brown ◽  
J Zacher ◽  
A Moore ◽  
...  
Keyword(s):  
Disease Activity ◽  
Functional Status ◽  
Global Assessment ◽  
Research Society ◽  
Selective Inhibitor ◽  
Response To Treatment ◽  
Single Measure ◽  
Male And Female ◽  
Osteoarthritis Research Society ◽  
Assessment Of Disease Activity

Lumiracoxib is a cyclooxygenase-2 selective inhibitor in development for the treatment of osteoarthritis (OA), rheumatoid arthritis and acute pain. We reviewed nine clinical studies of 1 − 52 weeks' duration demonstrating the efficacy of lumiracoxib in OA. Male and female patients aged ≥ 18 years with primary OA of the hand, hip or knee received lumiracoxib, placebo or active comparators (diclofenac, celecoxib or rofecoxib). Lumiracoxib provided consistent reductions in OA pain intensity and improvements in the patient's global assessment of disease activity and functional status (assessed using the Western Ontario and McMaster Universities Osteoarthritis Index questionnaire or the Australian/Canadian OA Hand Index). These results were superior to placebo and similar to the active comparators tested. In addition, lumiracoxib was consistently superior to placebo and generally similar to active comparators in terms of the new Outcome Measures in Clinical Trials and Osteoarthritis Research Society International criteria. These were used to provide a single measure of response to treatment, taking into account pain, the patient's global assessment of disease activity and functional status.

scholarly journals The challenges and controversies of measuring disease activity in systemic sclerosis

2018 ◽  
Vol 3 (2) ◽  
pp. 115-121 ◽  
Author(s):  
Laura Ross ◽  
Murray Baron ◽  
Mandana Nikpour
Keyword(s):  
Clinical Trials ◽  
Systemic Sclerosis ◽  
Disease Activity ◽  
Outcome Measures ◽  
Activity Index ◽  
Disease Status ◽  
Significant Research ◽  
History Of ◽  
Major Alteration ◽  
Definition Of

Major alteration of the natural history of systemic sclerosis is limited with current treatments, and the development of novel therapies has been hampered, in part, by the lack of fully validated multi-system outcome measures. There remains a lack of consensus as to the very definition of systemic sclerosis disease activity, complicating efforts to measure activity in clinical trials. Previously published multi-system measures of disease status are yet to be fully validated according to the Outcome Measures in Rheumatology (OMERACT) filter. There is currently significant research interest in developing new systemic sclerosis–specific measures to better describe and compare patient cohorts and measure therapeutic responses in clinical trials. An accurate measure of disease activity in systemic sclerosis will facilitate the enrichment of clinical trials with patients who have active disease, targeting a group of patients most likely to benefit from therapeutic intervention. In addition, following on from successes in other rheumatic conditions, a state of low disease activity, measured by an activity index, may become a clinical trial end point and therapeutic target. The Scleroderma Clinical Trials Consortium has undertaken to develop a definition of disease activity and fully validate a new systemic sclerosis activity index. The Scleroderma Clinical Trials Consortium Activity Index will be developed using consensus and data-driven methods and is envisaged to be widely used in research and clinical settings.

THU0628-HPR SSCENTRY: A PERSONAL DISEASE DIARY APP FOR SYSTEMIC SCLEROSIS PATIENTS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 558-559
Author(s):  
E. Praino ◽  
F. Scioscia ◽  
C. Scioscia ◽  
G. Loseto ◽  
F. Gramegna ◽  
...  
Keyword(s):  
Systemic Sclerosis ◽  
Disease Activity ◽  
General Health ◽  
Clinical Investigation ◽  
Well Being ◽  
Data Encryption ◽  
Psychological Well Being ◽  
The Core ◽  
Investigation Methods ◽  
Qualitative Interview Study

Background:Systemic Sclerosis (SSc) is a connective tissue disease characterized by severe alterations in the microvasculature and progressive fibrosis of the skin and internal organs [1]. Management of SSc is not easy, for both patients and physicians [2]. Symptoms are manifold and have a significant impact on patient’s daily autonomy and psychological well-being.Objectives:SScEntry (SSc data Entry tool; Figure 1) is a solution conceived to assist SSc patients in monitoring their disease, as a kind of “sentry”. The core idea is to provide patients with a personal diary to annotate and track the onset, evolution and resolution of symptoms as well as any changes in their general health condition, through an app for iOS and Android smartphones and tablets.Figure 1.SScEntry logo.Methods:SScEntry is a smartphone/tablet app designed by rheumatology and computer science engineering specialists in close partnership [3]. A carefully designed user interface (UI), inspired to a social network wall, allows annotating the evolution of symptoms by means of standard clinical investigation methods such as scientifically validated questionnaires. The UI facilitates data collection through speech-based interaction as well as touch and gestures optimized for patients with finger skin lesions and joints impairments. User engagement over the course of time is fostered by: follow-up reminders to update information on the evolution of past events and periodic questionnaires for general health assessment; the integration of symptom photos taken with on-device camera and health data collected from wearable devices; gamification features. Privacy and security have been a primary design concern, with app access protection and full on-device data encryption; no personal data transmission occurs without explicit user consent. SScEntry generates a disease activity summary report, for displaying to the physician during visit or emailing/printing.Results:SScEntry is ready for Android and iOS smartphones and tablets. All planned features have been implemented (Figure 2). Currently supported languages are English and Italian. Areas of interest include vascular, cutaneous, articular, visceral (gastro-intestinal and cardio-pulmonary) as well as relationship, sexual and working life.Figure 2.SScEntry features.Conclusion:Novel Narrative-based Medicine approaches are getting increasing attention to enhance the mutual understanding between patient and physician, reinforcing the therapeutic adherence at the core of healthcare. This is particularly important with chronic and disabling diseases like SSc. Involving patients in disease management with SScEntry will increase their compliance and confidence, with benefits on psychological well-being. Expected benefits for rheumatologists include better evaluation of target therapy and outcomes, as no data on disease activity is lost during the patient clinical history.References:[1]J. Varga et al. (2017) Pathogenesis of systemic sclerosis: recent insights of molecular and cellular mechanisms and therapeutic opportunities. J Scleroderma Relat Disord 2:137–52.[2]L. Mouthon et al. (2017) Patients’ views and needs about systemic sclerosis and its management: a qualitative interview study. BMC Musculoskelet Disord 18(1):230.[3]M. Bradway et al. (2015) Mobile Health: empowering patients and driving change. Trends in Endocrinology & Metabolism, 26(3):114-117.Disclosure of Interests:Emanuela Praino: None declared, Floriano Scioscia: None declared, Crescenzio Scioscia: None declared, Giuseppe Loseto: None declared, Filippo Gramegna: None declared, Saverio Ieva: None declared, Agnese Pinto: None declared, Michele Ruta: None declared, Eugenio Di Sciascio: None declared, Giovanni Lapadula: None declared, Florenzo Iannone Consultant of: Speaker and consulting fees from AbbVie, Eli Lilly, Novartis, Pfizer, Roche, Sanofi, UCB, MSD, Speakers bureau: Speaker and consulting fees from AbbVie, Eli Lilly, Novartis, Pfizer, Roche, Sanofi, UCB, MSD

Epidemiology and Natural History of Systemic Sclerosis

1990 ◽  
Vol 16 (1) ◽  
pp. 1-10
Author(s):  
Virginia D. Stem ◽  
Thomas A. Medsger
Keyword(s):  
Systemic Sclerosis ◽  
Natural History ◽  
History Of

scholarly journals AB0223 ASSESSMENT OF DISEASE ACTIVITY IN SYSTEMIC SCLEROSIS: THE COMPARISON BETWEEN REVISED EUSTAR AND ESCSG ACTIVITY INDEXES

2019 ◽  
Author(s):  
Yasemin Yalçınkaya ◽  
ümmügülsüm Gazel ◽  
Sema Kaymaz Tahra ◽  
Aysun Aksoy ◽  
Murat Karabacak ◽  
...  
Keyword(s):  
Systemic Sclerosis ◽  
Disease Activity ◽  
Assessment Of Disease Activity

scholarly journals Natural history of systemic sclerosis–related interstitial lung disease: How to identify a progressive fibrosing phenotype

2019 ◽  
Vol 5 (2_suppl) ◽  
pp. 31-40 ◽  
Author(s):  
Elizabeth R Volkmann
Keyword(s):  
Systemic Sclerosis ◽  
Interstitial Lung Disease ◽  
Lung Function ◽  
Natural History ◽  
Lung Disease ◽  
Disease Progression ◽  
Rapid Progression ◽  
History Of ◽  
Rate Of Decline ◽  
Patients Experience

The natural history of interstitial lung disease in patients with systemic sclerosis is highly variable. Historical observational studies have demonstrated that the greatest decline in lung function in systemic sclerosis occurs early in the course of the disease; however, not all patients experience a decline in lung function even in the absence of treatment. Furthermore, among patients who do experience a decline in lung function, the rate of decline can be either rapid or slow. The most common clinical phenotypes of systemic sclerosis–related interstitial lung disease are, therefore, as follows: (1) rapid progressors, (2) gradual progressors, (3) stabilizers, and (4) improvers. This review summarizes the features of systemic sclerosis–related interstitial lung disease patients who are more likely to experience rapid progression of interstitial lung disease, as well as those who are more likely not to experience interstitial lung disease progression. Understanding the clinical, biological, and radiographic factors that consistently predict interstitial lung disease–related outcomes in systemic sclerosis is central to our ability to recognize those patients who are at heightened risk for interstitial lung disease progression. With new options available for treating patients with systemic sclerosis–related interstitial lung disease, it is more important than ever to accurately identify patients who may derive the most benefit from aggressive systemic sclerosis–related interstitial lung disease therapy. Early therapeutic intervention in patients with this progressive fibrosing phenotype may ultimately improve morbidity and mortality outcomes in patients with systemic sclerosis–related interstitial lung disease.

scholarly journals Natural history of disease activity and damage in patients with cutaneous lupus erythematosus

2018 ◽  
Vol 79 (6) ◽  
pp. 1053-1060.e3 ◽  
Author(s):  
Khor Jia Ker ◽  
Noelle M. Teske ◽  
Rui Feng ◽  
Benjamin F. Chong ◽  
Victoria P. Werth
Keyword(s):  
Natural History ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Cutaneous Lupus Erythematosus ◽  
History Of Disease ◽  
History Of ◽  
Cutaneous Lupus

scholarly journals The Need for SPACE to Plan the Future for Spondyloarthritis

2021 ◽  
pp. jrheum.211212
Author(s):  
Mark Hwang ◽  
Michael H. Weisman
Keyword(s):  
Alcohol Consumption ◽  
Natural History ◽  
Disease Activity ◽  
Axial Spondyloarthritis ◽  
Lifestyle Factors ◽  
Recent Onset ◽  
The Future ◽  
History Of ◽  
Over Time

"Lifestyle Factors and Disease Activity Over Time in Early Axial Spondyloarthritis: The SPondyloArthritis Caught Early (SPACE) Cohort" by Exarchou et al aimed at looking at the importance of baseline lifestyle factors of BMI, smoking, and alcohol consumption (AC) on disease activity in recent-onset axial spondyloarthritis (axSpA).1 Does this study add to our knowledge of the natural history of axSpA?

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