Standardized reporting for systematic global evaluation of axial spondyloarthritis: An evidence-based and consensus-driven initiative

被引:0
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作者
Ruyssen-Witrand, Adeline [1 ,25 ]
Caillet-Portillo, Damien [2 ]
Najm, Aurelie [3 ]
Fogel, Olivier [4 ]
Baillet, Athan [5 ]
Claudepierre, Pascal [6 ]
Conort, Orenella [7 ]
Dernis, Emmanuelle [8 ]
Fayet, Francoise [9 ]
Gossec, Laure [10 ]
Goupille, Philippe [11 ]
Hudry, Christophe [12 ]
Letarouilly, Jean -Guillaume [13 ]
Lukas, Cedric [14 ]
Marotte, Hubert [15 ]
Molto, Anna [16 ]
Pouplin, Sophie [17 ]
Senbel, Eric [18 ]
Sordet, Christelle [19 ]
Tournadre, Anne [20 ]
Truchetet, Marie-Elise [21 ,22 ]
Wendling, Daniel [23 ]
Dougados, Maxime [24 ]
机构
[1] Univ Toulouse 3, Toulouse Univ Hosp, Rheumatol Ctr, Ctr Invest Clin Toulouse CIC1436,Inserm,Team PEPSS, Toulouse, France
[2] Univ Toulouse 3, Toulouse Univ Hosp, Rheumatol Ctr, Toulouse, France
[3] Univ Glasgow, Inst Infect & Immun, Coll Med Vet & Life Sci, Glasgow, Scotland
[4] Hop Cochin, AP HP, Dept Rheumatol, Paris, France
[5] Univ Grenoble Alpes, TIMC, CNRS UMR5525, Grenoble, France
[6] Univ Paris Est Creteil, Hop Henri Mondor, AP HP, Serv Rhumatol,EA 7379,EpiDermE, Paris, France
[7] Hop Cochin, AP HP, Dept Clin Pharm, Paris, France
[8] Gen Hosp Le Mans, Dept Rheumatol & Clin Immunol, Le Mans, France
[9] Clermont Univ Hosp, Rheumatol Ctr, Clermont Ferrand, France
[10] Sorbonne Univ, Pitie Salpetriere Hosp, AP HP, Inserm,Inst Pierre Louis Epidemiol & Sante Publ,Rh, Paris, France
[11] Univ Tours, Univ Hosp Tours, Dept Rheumatol, EA 6295, Tours, France
[12] Inst Mutualiste Montsouris, Paris, France
[13] Univ Lille, Rheumatol Dept, CHU Lille, FHU PRECISE, Lille, France
[14] Univ Montpellier, Univ Hosp Montpellier, Dept Rheumatol, Inserm UA11 IDESP, Montpellier, France
[15] Univ Jean Monnet St Etienne, Serv Rhumatol, CHU St Etienne, Mines St Etienne,Inserm,SAINBIOSE U1059, F-42023 St Etienne, France
[16] Univ Paris Cite, Ctr Res Epidemiol & Stat CRESS, ECAMO Team, Inserm U1153, Paris, France
[17] Rouen Univ Hosp, Rheumatol Ctr, Rouen, France
[18] Ctr Rhumatol Eldorado, Marseille, France
[19] Univ Strasbourg, Strasbourg Univ Hosp, Rheumatol Ctr, Strasbourg, France
[20] Univ Clermont Auvergne, Clermont Univ Hosp, Rheumatol Ctr, UNH INRAe, Clermont Ferrand, France
[21] Hop Pellegrin, Dept Rheumatol, Bordeaux, France
[22] Bordeaux Univ, CNRS, ImmunoConcept, UMR 5164, F-33000 Bordeaux, France
[23] Univ Franche Comte, Univ Hosp, Rheumatol Ctr, CHU Besancon,EA4266, Besancon, France
[24] Univ Paris Cite, Hop Cochin, AP HP, Dept Rheumatol,PRES Sorbonne Paris Cite,Inserm U11, Paris, France
[25] Purpan Teaching Hosp, Rheumatol Ctr, 1 Pl Dr Baylac, F-31059 Toulouse 9, France
关键词
Spondyloarthritis; Disease assessment; Comorbidities; Quality of life; E-health; INFLAMMATORY RHEUMATIC-DISEASES; HEALTH; COMORBIDITIES; INFORMATION; MANAGEMENT; QUALITY; ONLINE; TOOL;
D O I
10.1016/j.jbspin.2024.105733
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Introduction: National and international scientific societies advocate for a regular, systematic, and standardized global evaluation of axial spondyloarthritis (axSpA) patients. However, there are no recommendations specifying the content of this global evaluation. This initiative aimed to propose a standardized reporting framework, using evidence-based and consensus approaches, to collect data on all domains of axSpA. Methods: A literature review and consensus process involved a steering committee and an expert panel of 37 rheumatologists and health professionals. The first steering committee took place in March 2022 and identified the main domains for inclusion in the standardized report. A hierarchical literature review was conducted to identify items within these domains and tools for assessment. The items and tools for assessment were discussed and consensus was reached through a vote session during an expert meeting that took place in March 2023. Results: The steering committee identified four main domains to include in the standardized reporting framework: disease assessment, comorbidities, lifestyle, and quality of life. Items and tools for assessment were adopted after the expert meeting. Additionally, recommendations regarding digital tools (websites, apps, social media) were provided. Conclusion: This initiative led to a consensus, based on evidence and expertise, on a reporting framework for use during periodic systematic global evaluations of axSpa in daily practice. (c) 2024 Published by Elsevier Masson SAS on behalf of Socie<acute accent>te<acute accent> franc , aise de rhumatologie.
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页数:8
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