Vasculitis patient journey: a scoping review of patient experiences with vasculitis

In order to understand the vasculitis journey from the patient's perspective, the existing literature was reviewed regarding patient perceptions of vasculitis' effect on four main domains of health: physical, psychological, social, and financial. A scoping review was performed using CINAHL, Embase, MEDLINE, PsychINFO, and other sources (smaller databases and grey literature). Inclusion criteria included all forms of primary vasculitis, adult patients (≥ 18 years old), and patient perspectives regarding at least one of the four identified health domains. Aggregates of patient experiences with vasculitis were categorized into one of the four health domains: physical, psychological, social, and financial. Nineteen qualitative studies from 2294 total non-duplicated articles were included. Generalized themes emerged for each of the four domains. In relation to physical health, patients were most affected by fatigue. Psychologically, patients were most affected by anxiety. Socially, patients experienced decreased social participation due to lifestyle changes associated with disease and social perceptions of vasculitis. Financially, vasculitis patients had decreased employment due to functional decline. Each of the four domains contributed to a decreased quality of life associated with vasculitis. Decreased quality of life in vasculitis is due to multiple factors across several health domains. Understanding the patient's journey allows physicians to understand patient goals and to better support them in their recovery. Patients may also have an improved understanding of their journey and the most relevant health domains affected.