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Abstract Number: 1550

Importance of Shared Decision-Making for Patients with ANCA-Associated Vasculitis

Jo Robson1, Montserrat Díaz Encarnación2, Peter Verhoeven3, Raquel Olivenza4, Monica Balcells4, Sara Monti5 and Andreas Kronbichler6, 1University of the West of England, Bristol, United Kingdom, 2Autonoma de Barcelona University, Barcelona, Spain, 3Vasculitis Stichting, Silvolde, Netherlands, 4CSL Vifor, Glattbrugg, Switzerland, 5Division of Rheumatology, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy; Department of Internal Medicine and Therapeutics, Università di Pavia, Pavia, Italy, 6Department of Internal Medicine IV (Nephrology and Hypertension), Innsbruck, Austria

Meeting: ACR Convergence 2023

Keywords: ANCA associated vasculitis, Patient reported outcomes

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Session Information

Date: Monday, November 13, 2023

Title: (1534–1553) Vasculitis – ANCA-Associated Poster II: Epidemiology, Outcomes, & Classification

Session Type: Poster Session B

Session Time: 9:00AM-11:00AM

Background/Purpose: ANCA-associated vasculitis (AAV) is a rare autoimmune disease associated with significant morbidity. It can present at any age and treatment needs change over time. Multimorbidity is common, leading to polypharmacy and increased treatment burden. Management is a complex balance of achieving effective disease control to prevent progressive organ damage and minimizing treatment-emergent toxicities with long-term health consequences. Revised EULAR recommendations in 2022 for the management of AAV recommend shared decision-making (SDM) between patient and specialist, acknowledging that involving patients in decision-making enables better understanding of patient needs and priorities and potential to improve treatment decisions. (1) As significant opportunity exists to enhance multidisciplinary care of AAV, this expert review aims to identify opportunities to support SDM across the care pathway.

Methods: Embase, Medline, and Cochrane Library were searched for relevant publications using terms and strategies including variations of ANCA-associated vasculitis plus shared decision-making in titles or abstracts. Extracted data are described without synthesis of quantitative data.

Results: Beyond the EULAR guidelines, few publications highlight the practice of, implementation of, or outcomes associated with SDM in AAV. Barriers to implementation include lack of sufficient knowledge and communication about the disease (owing to its rarity and few experts), uncertain prioritization of management goals, absence of proven initiatives in healthcare settings, lack of dedicated healthcare spaces, and poor patient health status. Central to SDM is discussion between patients and specialists on the benefits and harms of therapeutic options, leading to collaborative management decisions based on the best available evidence. Potential approaches to meet the challenges of practical implementation include sharing information on AAV management to help close knowledge gaps by broadening understanding of disease impact, key warning symptoms, and treatment-related toxicities. Support mechanisms for SDM in AAV include use of decision aids such as the three-talk model based on choice, option and decision talk stages to provide balanced information. Increasing use of patient-reported outcome measures may help evaluate the impact of symptoms and interventions on patient health-related quality of life (HRQoL), and should support the choice of treatment.

Conclusion: The implementation of SDM in AAV has the potential to increase knowledge about the disease and risks, give patients an active role allowing for a collaborative approach and enhance the responsiveness and confidence of patients and caregivers, supporting enhanced outcomes and improved patient HRQoL.


Disclosures: J. Robson: CSL Vifor, 2, 5, 6, Sanofi, 5, UKIVAS Registry, 12, Non profit organization Rheumatology Co-Chair; M. Díaz Encarnación: AstraZeneca, 6, GlaxoSmithKlein(GSK), 6, Novartis, 1; P. Verhoeven: None; R. Olivenza: CSL Vifor, 3; M. Balcells: Amgen, 12, RSU, CSL Vifor, 3; S. Monti: CSL Vifor, 6; A. Kronbichler: Catalyst Biosciences, 2, CSL Vifor, 2, Delta4, 2, GlaxoSmithKlein(GSK), 2, Otsuka, 2, Waiden Biosciences, 2.

To cite this abstract in AMA style:

Robson J, Díaz Encarnación M, Verhoeven P, Olivenza R, Balcells M, Monti S, Kronbichler A. Importance of Shared Decision-Making for Patients with ANCA-Associated Vasculitis [abstract]. Arthritis Rheumatol. 2023; 75 (suppl 9). https://acrabstracts.org/abstract/importance-of-shared-decision-making-for-patients-with-anca-associated-vasculitis/. Accessed .
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