Patient-reported outcomes in vasculitis

Systemic vasculitides are a group of inflammatory disorders with a broad spectrum of acute and subacute clinical presentations and a chronic and relapsing disease course [1]. They are characterized by inflammation of the blood vessel walls and can involve any organ system including the skin, lungs, kidneys, ears, nose and throat (ENT), nervous system, and joints. Vasculitis is defined according to the size of the vessel wall involved (small, medium, large, or variable vessel) [2]. Current treatment strategies focus on glucocorticoids, immunosuppressive, and biological medications [1]. The diseases themselves and the associated toxicity of treatments can impact patients’ quality of life (QoL). Patient-reported outcomes (PRO) include Patient-reported outcome measures (PROMs) and Patient-reported experience measures (PREMS).

PROMs are questionnaires designed to capture the impact of having a disease and its treatment on a patient's health-related quality of life (HRQoL). By using PROMs, a quantitative approach can capture the patient's own assessment of their health without the subjective interpretation of a clinician [3]. A PROM can capture the experience of pain, fatigue, anxiety, or depression which may not be measured in clinical assessments such as imaging, biochemical, or clinical outcome scores [3]. PROMs have become increasingly embedded in rheumatological practice with the development of generic and disease-specific PROMs (see Table 1). There are advantages to generic and disease-specific PROMs; generic PROMs allow comparison between different diseases, while disease-specific PROMs are more sensitive to outcomes within that disease, e.g. impact of visual loss in Giant Cell Arteritis (GCA). There is a role for both in the evaluation of impact in patients with vasculitis.

PREMs are tools designed to measure patients' perspectives on the care they have received. For example, PREMs may be reported both before and after a particular intervention or care pathway [4]. Put simply, from the patient's perspective, “what” happened during a care experience and whether this was satisfactory or not [5]. Utilization of PREMs data can enable healthcare providers to understand the impact of services from a patient perspective, and therefore drive service improvements. Although still not commonplace, the use of PREMs data is increasing. Bull et al. conducted a systematic review in 2019 identifying 88 PREMs in use across medical and surgical specialties [5]. In 2021, Bryant et al. reported only 6 validated PREMs are in use in rheumatology worldwide, with nil validated for use in systemic vasculitis (Table 2) [4].

Because vasculitis is a multisystem chronic disease; its management can require patients to navigate through complex care pathways; receiving care from different specialties including rheumatology, renal, pulmonology, and ENT specialists, and in different locations. The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) survey in 2018 highlighted the challenges patients with rare autoimmune diseases face in their healthcare journey [6]. For example, 93% of patients saw multiple medical specialists as part of routine treatment and 61% of patients lacked confidence that there was a coordinated care plan in place [6]. Using PREMs to capture patients’ assessment of their care could potentially drive service improvements and care coordination.

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