381. Quality-of-Life Impact of Cutaneous Vasculitis: Findings from the VascSkin study and Vasculitis Patient-Powered Research Network
Creators: name: Mann1, Sarah
Publisher: name: Zenodo
Year: 2022
Subjects: Vasculitis
ANCA
Abstracts
Giant Cell Arthritis
MPA
GPA
EGPA
Takayasu
IgA vasculitis

description: <strong>Background / Objectives</strong>: Cutaneous manifestations of vasculitis can cause itching, pain, and ulceration, and their psychosocial effects may be significant. However, the quality-of-life (QL) impact of skin vasculitis has not been systematically evaluated. This study aimed to assess the QoL of patients with cutaneous manifestations of vasculitis and to determine potential factors affecting patients’ experiences. These data may help form the basis of a patient-reported outcome tool for measuring disease severity and response to treatment in clinical studies. <strong>Methods:</strong> Utilizing the Vasculitis Patient-Powered Research Network (VPPRN), and incorporating feedback from patient partners, we disseminated an online survey to patients with cutaneous manifestations of vasculitis (all major types) including validated measures of skin-related QoL (Skindex-29) and general health and wellbeing (SF-36). <strong>Results:</strong> A total of 234 responses were received. After eliminating duplicates and incomplete responses, 190 remained. Of these, 107 patients had experienced active skin lesions within the preceding 4 weeks and were included for analysis. Skindex-29 survey results were categorized using previously published methods, and SF-36 scores of 50 on a scale of 0-100 were considered “average.” The mean QoL impact of skin vasculitis was considered to be severe in every domain of the Skindex-29, including “symptoms,” “emotions,” “functioning,” and “overall,” and QoL was below average in 6/8 domains of the SF-36 health survey. Female patients experienced, on average, worse QoL than male patients. QoL impact was greater with increasing disease severity. When analyzed by vasculitis type, cutaneous small vessel vasculitis (CSVV) was determined to have the greatest impact on QoL as assessed by both the Skindex-29 and the SF-36, followed by urticarial vasculitis and IgA vasculitis, and then the remaining types. QoL impact was greatest for those with disease duration of less than 2 years. <strong>Conclusions:</strong> Administration of validated skin specific and generic QoL measures to patients with cutaneous manifestations of vasculitis revealed diminished QoL across multiple domains, suggesting skin vasculitis has an important, even severe, impact on health and wellbeing in various types of vasculitis. The negative impact on QoL was notably greater among female patients and those with increased vasculitis disease activity. Interestingly, skin limited CSVV had the greatest impact on QoL, supporting the substantial effect cutaneous vasculitis has on patients’ symptoms and self-perception of their health. Future work will examine more closely the role of cutaneous vasculitis in determining overall health related QoL, compare the impact on QoL of cutaneous vasculitis to that of other skin conditions, and evaluate changes in QoL resulting from successful management of vasculitis involving the skin. <strong>Disclosures:</strong> None