• Systemic vasculitis
• Patient Reported Outcome Measures
• Therapeutics

We wish to thank Robson et al for emphasising the role of shared decision-making between healthcare providers and patients with ANCA-associated vasculitides (AAV).1 For the first time, a statement on shared decision-making in the care of patients with AAV was introduced to the European Alliance of Associations for Rheumatology (EULAR) recommendations for the management of AAV with its most recent update.2 As there are yet no data on impact of shared decision-making in AAV, the statement on shared decision-making was provided in the format of an overarching principle. Despite the lack of published evidence for AAV, the overarching principle of shared decision-making was supported by the task force with a high level of agreement of 9.6±0.5.

As Robson et al point out, there can be substantial barriers to implementation of shared decision-making in clinical care. Structured patient education on the impact of the different organ manifestations of AAV, organ damage related to AAV and its treatment as well as information on efficacy and potential harms of available therapies are important steps to successful shared decision-making. While shared decision-making is important in many areas of care, we agree that prioritisation is important for implementation of shared decision-making in clinical practice. Shared decision-making is particularly important in areas which have a strong impact on patient outcomes, but where the available evidence does not allow strong recommendations. A typical example is the use of plasma exchange in AAV where the potential risk reduction for end-stage kidney disease in defined subgroups needs to be balanced against potential harms (ie, severe infections) and the invasiveness of the procedure. In this context, it seems important to discuss treatment goals, which may differ between patients and physicians and an initial study has explored patient preferences for this indication.3 Patient-reported outcomes (PRO) in patients with AAV such as the AAV-PRO are not correlated with clinician-derived instruments (including the Birmingham Vasculitis Activity Score (BVAS) and the Vasculitis Damage Index (VDI).4 Therefore, structured assessment of the patient perspective using AAV-PRO or other instruments should be included in all future clinical trials in AAV. In addition, the research agenda should address how implementation of shared decision-making in AAV affects traditional clinical outcomes as well as PRO.