Shared decision-making (SDM) is a collaborative approach to disease management whereby patients and clinicians discuss the benefits and harms of therapy and decide together how a patient’s condition should be managed based on individual values and preferences and the best available clinical evidence.1 The reported benefits of SDM are widespread and include patient empowerment, improved treatment adherence and better disease control. SDM is particularly important for patients with complex diseases such as anti-neutrophil cytoplasmic antibody-associated vasculitis (AAV), where numerous conflicting factors need to be balanced to reach optimal individualised treatment and patient outcomes.

In AAV, significant morbidity relates not only to the pathological processes that lead to chronic vascular inflammation and end-organ damage, but also to the required treatment.2 Multimorbidity is common, particularly in older patients, leading to polypharmacy and increased treatment burden.3 Many patients describe how AAV has a range of negative impacts on all aspects of health-related quality of life (HRQoL), owing to irreversible damage and treatment-emergent toxicities with long-term health consequences.1 4

In AAV, the European Alliance of Associations for Rheumatology (EULAR) 2022 recommendations include SDM between patients and specialists, acknowledging that involving patients in decision-making enables better understanding of patient needs and priorities and potential to improve treatment decisions.1 Patients with AAV should be offered best care which must be based on SDM between the patient and the physician considering efficacy, safety and costs. Patients should have access to information focusing on the impact of AAV and its prognosis, key warning symptoms and treatment (including treatment-related complications). Patients should be periodically screened for treatment-related adverse effects and comorbidities. These recommendations form an important framework for the implementation of SDM for patients with AAV in clinical practice.

However, implementation of SDM in clinical practice is proving difficult to achieve despite substantial general interest in the concept. Barriers to implementation include lack of sufficient knowledge and communication about the disease, uncertain prioritisation of management goals, absence of proven initiatives in healthcare settings, lack of dedicated healthcare spaces and poor patient health status.3

Barriers to SDM implementation and adoption must be overcome across the care pathway. Problem and decision prioritisation is the first step in SDM and seeks to identify the patient’s primary concerns, priorities and preferences before engaging in patient-centred goal setting.3 Individualised treatment can be supported through use of decision aids such as the three-talk model based on choice, option and decision talk stages to provide balanced information.

Information sharing between physicians and patients and between physicians can help close knowledge gaps by broadening understanding of disease impact, key warning symptoms and treatment-related toxicities.1 Given the substantial side effects associated with traditional AAV treatments, strategies that do not pose an additional HRQoL burden should be considered. Recent evidence from randomised controlled trials supports the use of reduced-dose glucocorticoid regimens with faster tapering without compromising efficacy.5 6 Moreover, the selective C5a receptor antagonist avacopan is now a treatment option in the EULAR recommendations for induction of remission in granulomatosis with polyangiitis or microscopic polyangiitis as part of strategies that include established treatments rituximab or cyclophosphamide to substantially reduce exposure to glucocorticoids.1

Tools such as patient-reported outcome measures may help to evaluate the impact of symptoms and interventions on patient HRQoL. Patient adoption of self-management measures, including proactive access of disease information, techniques to reduce symptoms and side effects, pursuit of health promotion activities and support from social networks, can also help.

Ultimately, measures to enable individualised patient care in AAV can help to optimise patient HRQoL and long-term outcomes. However, increased efforts of the entire AAV community are needed to develop and implement adequate tools and processes that will support implementation of SDM.

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