VPPRN Research Poster Gallery | RESEARCH IN ACTION
The Vasculitis Patient-Powered Research Network (VPPRN) is proud to present this poster gallery to not only showcase the breadth of research of the VPPRN, but the vital role our Network members play in the design and execution of these studies.
In this gallery, you will find:
- an overview of the current research from experts in the field using VPPRN data, and
- insight from our lead authors as to why the study is important to members of the VPPRN.
It is because of the continued participation and engagement of our VPPRN members that research studies like these are possible.
Data drives research & we cannot do research without our VPPRN members. For that, we thank our Network.
American College of Rheumatology (ACR) Annual Meeting
November 12-14, 2022 | Philadelphia, PA
ACR 2022 VPPRN Poster #1
Due to age or our chronic health conditions, some people experience a physiological decline, a decrease in the ability to “bounce back” from stressors. This change can lead to increased vulnerability to adverse health outcomes. In the medical literature, this process is called frailty.
This study, also known as the Vasculitis Strength Study (VascStrong), aims to describe the prevalence of common health conditions associated with frailty in patients living with vasculitis and describe its impact on health-related quality of life and clinical outcomes. As part of round 1 of this study, we describe the prevalence and factors associated with self-reported frailty in patients with vasculitis.
This research was conducted 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 (John Stadler) who played a vital role in the design of the survey and interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN.
Frailty was measured using the FRAIL scale, a self-report measure which queries on 5 domains: (1) Fatigue, (2) Resistance, (3) Ambulation, (4) Illnesses, and (5) Loss of Weight.
- Overall, 21.6% and 42.1% classified as frail and pre-frail, respectively.
- Among the individual FRAIL domains, fatigue and resistance were the most frequent, while illnesses were the least common.
Self-reported frailty or pre-frailty is prevalent in the majority of patients with multiple forms with vasculitis and is associated with worse health-related quality of life.
Identifying factors affecting frailty trajectories and outcomes could inform development of interventions focused on ameliorating frailty in patients with vasculitis.
ACR 2022 VPPRN Poster #2
This study, also known as the VascSkin Study, assessed the quality-of-life of patients with skin (cutaneous) manifestations of vasculitis and evaluated factors affecting the patient experience.
This research was conducted 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 (Angelina Patrone) who was helpful in the design of the survey and interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN.
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.
ACR 2022 VPPRN Poster #3
Urticarial vasculitis (UV) is a rare disease (annual incidence of < 1 per million) and as such, difficult to do traditional center-based research.
Patient participation in research is important but research studies are often not accessible to patients who do not live near a study center. The Vasculitis Patient-Powered Research Network (VPPRN) allows participation by patients with vasculitis from across the world; however, it is important to ensure that the data being collected by the VPPRN is of high quality.
The aim of this study is to describe and validate the patient-reported data within the VPPRN for UV. This project is part of a larger effort to validate the data within the VPPRN for each type of vasculitis.
This research was conducted completely through the VPPRN and demonstrates the importance of the data we collect. The project team included a VPPRN Patient Research Partner (Dianne G. Shaw) who was helpful in the design of the survey and interpretation of the results.
The findings from this research study are a direct result of the participation, engagement, and health information provided by members of the VPPRN.
This study evaluated data provided by patients in the VPPRN with Urticarial Vasculitis and found that the signs and symptoms of disease, biopsy and blood test results, and treatments are similar to what has been reported in studies in which data were collected by physician researchers through in-person visits.
These results are quite important and highlight that the VPPRN online registry provides a feasible and cost-effective method of conducting research by directly engaging patients.
Past VPPRN Research Posters
Annual International Vasculitis Foundation Symposium
July 16, 2022 | Virtual Meeting
GUIDED TOUR OF THE POSTER GALLERY
Watch Michael Putman, MD, MSCI from the Medical College of Wisconsin on this tour! He leads us through the gallery by providing an overview of the posters and discussing the impact of Network member engagement in the research of the Vasculitis Patient-Powered Research Network.
VPPRN Poster #1
STUDY AIM:
To elicit patient preferences regarding the use of plasma exchange (a procedure in which the blood is processed by a machine and antibodies are removed) in ANCA-associated vasculitis (AAV) and its tradeoffs of end stage kidney disease (ESKD) and serious infection in an international online survey of adults with AAV.
VPPRN Poster #2
STUDY AIM:
To assess among patients with vasculitis trends in anxiety and interruptions in use of immunosuppression drugs during the COVID-19 pandemic and evaluate reasons for such medication interruptions.
VPPRN Poster #3
STUDY AIM:
To compare the clinical characteristics and determine the reliability of a self-reported diagnosis of giant cell arteritis (GCA) or Takayasu’s arteritis (TAK) in an international, internet-based cohort.
VPPRN Poster #4
STUDY AIM:
Cutaneous manifestations of vasculitis may cause itching, pain, and ulceration, while psychosocial effects may be significant. Yet, the quality-of-life (QoL) impact of skin vasculitis has not been systemically evaluated. Prior work on other skin diseases (e.g., chronic urticaria, psoriasis, hidradenitis suppurativa) demonstrate significant effects on QoL.
This study assessed the quality-of-life of patients with cutaneous manifestations of vasculitis and evaluated factors affecting the patient experience.
VPPRN Poster #5
STUDY AIM:
Relapses are common in vasculitis and preventing relapses is a goal of treatment. It is unknown to what degree patients value relapse avoidance and how much risk they are willing to accept to avoid relapses. With patient partners we designed, piloted, and administered a survey called the Vasculitis: Effects of Remission Maintenance Therapy on Relapse and Side Effects: Patient Preferences (VERITAS).
VPPRN Poster #6
STUDY AIM:
To reach consensus about measures considered by patients and physicians to be most important when assessing response to treatment in AAV.
VPPRN Poster #7
STUDY AIM:
Describe an internet-based cohort of participants with a self-reported diagnosis of PAN and determine how many met established criteria for PAN.
Who made this research possible? VPPRN MEMBERS!
It is because of the continued participation and engagement of our Network members that research studies like these are possible.
The more people participate, the more data is available to help clinicians and researchers better understand vasculitis.
Data drives research! We cannot do this without the participation of our Network members!
Not a VPPRN member, click HERE to learn more
