Domains and outcome measures for the assessment of limited cutaneous systemic sclerosis: an international collaborative scoping review
| Autor: | Alain Lescoat, Robert D Sandler, François Zimmermann, David Roofeh, Michael Hughes, John D Pauling, Susan L Murphy, Yen T Chen, Whitney Townsend, Maya H Buch, Dinesh Khanna |
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| Přispěvatelé: | Institut de recherche en santé, environnement et travail (Irset), Université d'Angers (UA)-Université de Rennes (UR)-École des Hautes Études en Santé Publique [EHESP] (EHESP)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Structure Fédérative de Recherche en Biologie et Santé de Rennes ( Biosit : Biologie - Santé - Innovation Technologique ), CHU Pontchaillou [Rennes], École des Hautes Études en Santé Publique [EHESP] (EHESP), University of Sheffield [Sheffield], University of Michigan [Ann Arbor], University of Michigan System, Royal United Hospitals Bath (RUH), University of Manchester [Manchester] |
| Rok vydání: | 2022 |
| Předmět: |
combined response index
Scleroderma Systemic outcome measure [SDV]Life Sciences [q-bio] domain limited cutaneous systemic sclerosis Article Rheumatology Scleroderma Limited Outcome Assessment Health Care Scleroderma Diffuse Quality of Life Humans scleroderma Pharmacology (medical) Reactive Oxygen Species |
| Zdroj: | Rheumatology (Oxford) Rheumatology Rheumatology, 2022, ⟨10.1093/rheumatology/keac049⟩ |
| ISSN: | 1462-0332 1462-0324 1460-2172 |
| Popis: | Objectives The aim of this study was to comprehensively identify instruments within relevant domains employed to assess lcSSc since the endorsement of its consensus definition in 1988. The overall objective is to inform the creation of a Combined Response Index for Scleroderma Trials Assessing lcSSc (CRISTAL). Methods MEDLINE and Embase were searched using terms selected to comprehensively retrieve titles and abstracts mentioning both lcSSc and dcSSc, along with those only mentioning lcSSc, SSc sine scleroderma, limited SSc and/or CREST/CRST. Because our initial assessment of the literature revealed that very few studies included only lcSSc subjects, we also assessed literature that included both cutaneous subsets. A total of 3964 titles and abstracts were screened by two reviewers, and 270 articles were selected for data extraction. Results We identified 27 domains encompassing 459 instruments. Instruments from ‘Skin involvement’, ‘Pulmonary involvement’ and ‘Health-related quality of life and general functioning’ were the most frequently retrieved. Among the 15 most represented instruments announced as primary end points in efficacy or effectiveness studies, 7 were clinician-reported outcomes (ROs), 7 were patient ROs, and one was a performance outcome (6 min-walk test). The mean proportion of lcSSc patients in studies of lcSSc, including studies that mention both lcSSc and dcSSc, was 56.4%, demonstrating that this subset is underrepresented in the literature, given that the prevalence of lcSSc ranges from 60% to 80% in national registries and international cohorts. Conclusion This scoping literature review provides a comprehensive identification of domains and outcomes used to assess lcSSc. Our results also highlight that lcSSc is underrepresented in the literature. |
| Databáze: | OpenAIRE |
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