血管炎ジャーナル

Patient Perspectives in Vasculitis Advocacy Support and Quality of Life

Abstract

Maurice Valerie*

Vasculitis encompasses a group of rare autoimmune diseases characterized by inflammation of blood vessels, leading to varying degrees of organ and tissue damage. Understanding patient perspectives is crucial for enhancing advocacy, support systems, and overall quality of life for those affected. This study aims to explore the experiences and needs of vasculitis patients to inform advocacy efforts, improve support mechanisms, and enhance quality of life. A mixed-methods approach was used, combining quantitative surveys and qualitative interviews. Participants included vasculitis patients recruited from support groups, online forums, and clinical settings. The survey assessed demographics, disease impact, and quality of life indicators, while interviews provided deeper insights into personal experiences and challenges. Patients reported a significant need for increased public and medical awareness of vasculitis. Many experienced delays in diagnosis due to a lack of awareness among healthcare providers. Advocacy efforts were perceived as crucial for improving diagnostic timelines and treatment outcomes. Emotional and social support emerged as critical factors in patient well-being. Support groups, both online and in-person, provided essential emotional support and practical advice.