Damage Index for Antiphospholipid Syndrome (DIAPS): An Antiphospholipid Syndrome Alliance for Clinical Trials and International Networking (APS ACTION) "Damage" working group report on strengths and limitations.

Autor: Balbi GGM; Discipline of Rheumatology, Universidade Federal de Juiz de Fora (UFJF), Juiz de Fora, Minas Gerais, Brazil., Gaspar P; Internal Medicine Department, Hospital Santa Maria, Unidade Local de Saúde Santa Maria, Lisbon, Portugal; Gulbenkian Institute for Molecular Medicine, Lisbon, Portugal; Centro Académico de Medicina de Lisboa, Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal., Cohen H; Haemostasis Research Unit, Department of Haematology, University College London, London, UK; Department of Haematology, University College London Hospitals NHS Foundation Trust, London, UK., Isenberg DA; Centre for Rheumatology, Division of Medicine, University College London, London, UK; Department of Rheumatology, University College London Hospitals NHS Foundation Trust, London, UK., Erkan D; Barbara Volcker Center for Women and Rheumatic Disease, Hospital for Special Surgery, Weill Cornell Medicine, New York, NY, USA., Andrade D; Discipline of Rheumatology, University of São Paulo (USP), Av Dr. Arnaldo 455, Third Floor, LIM 17, São Paulo, São Paulo 01246-903, Brazil. Electronic address: danieli.andrade@hc.fm.usp.br.
Jazyk: angličtina
Zdroj: Seminars in arthritis and rheumatism [Semin Arthritis Rheum] 2024 Dec 04; Vol. 70, pp. 152605. Date of Electronic Publication: 2024 Dec 04.
DOI: 10.1016/j.semarthrit.2024.152605
Abstrakt: Objectives: To gather the perspectives of APS ACTION members regarding the strengths and limitations of Damage Index for Antiphospholipid Syndrome (DIAPS); and establish recommendations for the improvement of DIAPS.
Methods: APS ACTION members were invited to answer a survey regarding their satisfaction with DIAPS scoring system and individual items. The level of agreement (LoA) among members with the inclusion of individual items in DIAPS was calculated (LoA of <75% was considered disagreement). Respondents' open-ended comments about DIAPS limitations were also collected, which helped formulate our recommendations for DIAPS improvement.
Results: Forty-two APS ACTION members (58.3%) answered the survey. Of them, 26 (61.9%) were satisfied, 4 (9.5%) were neutral, and 12 (28.6%) were dissatisfied with the current DIAPS scoring system. Fifteen items (39.5%) presented a LoA <75% regarding the inclusion in DIAPS. Respondents provided comments that were grouped under six main categories related to concerns about: a) definitions and attribution of damage (including causality and temporal relationship); b) scoring system; c) overlapping items; d) specific items (exclusion of redundant items and inclusion of additional ones); e) the need to incorporate multiple events; and f) feasibility and practicality. Finally, the APS ACTION "Damage" Working Group developed 7 recommendations that should be considered for the next generation DIAPS.
Conclusion: Approximately 60% of respondents were satisfied with DIAPS and its definitions; however, our survey demonstrated that there is substantial room to improve the current damage index for APS. Efforts for updating DIAPS should consider the APS ACTION "Damage" Working Group recommendations.
Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
(Copyright © 2024 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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