Abstract:

Background/Purpose:

Optimal management of vasculitis needs to address disease aspects of significance to patients. Understanding the patients’ journey with vasculitis allows clinicians to identify patient goals for treatment. We aimed to review the existing literature regarding patient perceptions of vasculitis’ effect on four main domains of health: physical, psychological, social, and financial.  

Methods:

A scoping review was performed using CINHL, 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.

Results:

19 studies from 2220 total (2095 after duplicates removed) were included: 14 quantitative, 4 qualitative, and one mixed quantitative-qualitative methods. Few articles covered more than one of the four health domains. Together, 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 and depression. 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.

Conclusion:

Decreased quality of life in vasculitis is due to multiple factors across several health domains. Understanding what patients are most affected by in each domain allows physicians to tailor care to meet the needs of the patient. Understanding the patient’s journey will allow physicians to understand patient goals and to better support them in their recovery. Patients will also have an improved understanding of their journey and the most relevant health domains affected.