Name of VPPRN Research Study:
Vasculitis: Effects of Remission Maintenance Therapies on Relapse Side Effects: Patient Preferences (VERITAS)
Tell us about yourself, your research and why this interests you.
My name is Lonnie Pyne. I am a nephrologist from McMaster University in Hamilton, Ontario, Canada. Tell us about your research – My research involved a survey of patients with vasculitis examining how they weigh the benefits and risks of maintenance therapy. We found that most patients would be willing to accept a maintenance therapy that leads to a 5% decrease in the risk of relapse. Less than a third of patients surveyed would not accept a maintenance therapy with a 15% decrease in the risk of relapse. This information will help to discuss risk and benefits with patients as well as inform future trials of maintenance therapy in vasculitis.
What’s been most rewarding to you as an investigator?
Being able to put evidence into practice with the patients I am fortunate enough to help care for.
Why is your research important to patients?
Relapses are common in vasculitis and preventing relapses is a goal of treatment. It is unknown to what degree patients value avoiding relapses and how much risk they are willing to accept to avoid relapses. With the assistance of Patient Research Partners, we designed, piloted, and administered a survey through the Vasculitis Patient-Powered Research Network (VPPRN) that studied the preference of patients with vasculitis when weighing the effects of therapy to maintain remission versus the potential side effects of the therapy. Through this research, we found that most respondents considered a reduction in the risk of relapse of at least 5% to be sufficient to accept additional therapy and less than one-third of respondents would reject an additional therapy if the treatment reduced the risk of relapse by 15%. This research is important to patients because it helps clinicians and researchers understand patients’ views on avoiding relapses versus the side-effects of treatments. This is information is useful both for counselling patients and for planning future clinical trials of therapy to maintain remission.
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.