Name of VPPRN Research Study:
Quality-of-Life Impact of Cutaneous Vasculitis: Findings from the VascSkin Study and the Vasculitis Patient-Powered Research Network
Tell us about yourself, your research and why this interests you.
Cutaneous manifestations of vasculitis have a large impact on patients but have been underemphasized and understudied. It is important to evaluate the significance of skin findings in vasculitis and how this impacts patients.
What’s been most rewarding to you as an investigator?
The rewards of learning something new or championing an issue which has been underappreciated are well worth the efforts.
I’m coaching my daughter’s baseball team this spring, and I’m not sure if that will be easier or more challenging than vasculitis research…
Why is your research important to patients?
This study assessed the quality-of-life of patients with skin (cutaneous) manifestations of vasculitis and evaluated factors affecting the patient experience. Surveys were sent to patients within the Vasculitis Patient Powered Research Network (VPPRN) with skin manifestations of vasculitis. The results revealed reduced quality-of-life across multiple aspects of life, suggesting skin vasculitis has a significant impact on health and well-being in various forms of vasculitis. Notably, skin-limited small-vessel vasculitis had a quality-of-life impact which met or exceeded the severity observed in other forms of vasculitis, suggesting skin manifestations of vasculitis have a substantial impact on patients’ symptoms and self-perception of health.
How was the VPPRN used in your research study?
This research was conducted completely through the VPPRN and demonstrates the efficiency and power of working with an engaged group of patients to advance research. The project team included a VPPRN Patient Research Partner who was helpful in the design of the survey and interpretation of the results.
This study would not have been possible without the participation of members of the VPPRN. As a result of their participation, we are able to execute research studies like this that provide practitioners data to better understand vasculitis leading to improved care and outcomes for patients with vasculitis.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN!
HUGE thank you to all of our VPPRN members! Your data makes research possible.
Congratulations again to all of our researchers and investigators for their hard work.