Vasculitis patient journey: a scoping review of patient experiences with vasculitis
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REVIEW ARTICLE
Vasculitis patient journey: a scoping review of patient experiences with vasculitis Navjeet Gill 1
&
Jan Willem Cohen Tervaert 2 & Elaine Yacyshyn 2
Received: 21 December 2019 / Revised: 8 September 2020 / Accepted: 12 September 2020 # International League of Associations for Rheumatology (ILAR) 2020
Abstract 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. Keywords Fatigue . Mental health . Patient experience . Perspective . Scoping review . Vasculitis
Introduction Vasculitis causes inflammation of vessel walls and comprises a group of disorders that are distinct in patient presentation [1]. Different types of vasculitis are categorized by the size of the vessel involved [1]. Due to the systemic nature of this condition, the impact on patients can be variable from mild to severe.
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s10067-020-05398-5) contains supplementary material, which is available to authorized users. * Elaine Yacyshyn [email protected] 1
Department of Medicine, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada
2
Division of Rheumatology, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB, Canada
The often-chronic nature of vasculitis requires long-term follow-up and treatment. Patients with vasculitis often have a wide variety of symptoms and the burden of these manifestations varies between patients. With
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