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

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.


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.