VPPRN Patient-Powered Research
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6-MONTH CHECK-IN FORMS – January 2023, July 2023 and January 2024
Every 6 months, we ask our VPPRN community to check-in and share updates on their health.
Take a look below to see what we learned about flares, fatigue, pain, symptoms of vasculitis, and members’ current state of their vasculitis at the January 2023, July 2023, and January 2024 check-ins.
What did we learn about FLARES and VASCULITIS?
Overall, we see similar rates of reported flares at the January 2023, July 2023, and January 2024 check-ins.
- More than two-thirds of patients in the VPPRN community did not report a flare of their vasculitis in the past 6 months.
- Approximately 25% of patients did report a flare.
To better understand why some patients with vasculitis experience flares and some do not, we need the VPPRN community to continue to provide patient data to do the research needed to find answers. Patients power research in vasculitis! Please continue to share your health updates with us and continue to stay engaged in research.
What did we learn about FATIGUE and VASCULITIS?
Overall, we see similar ratings of fatigue at the January 2023, July 2023 and January 2024 check-ins.
At the January 2024 check-in, we learned that:
- Most patients (approximately 88%) experience some fatigue related to their vasculitis. This is consistent with the Network scores from January 2023 and July 2023.
Fatigue is common among patients with vasculitis. Patients may have fatigue even if other vasculitis symptoms are under control. By completing the VPPRN check-in forms every 6 months, it will tell us more about fatigue and its impact on quality of life for people living with vasculitis. This research is vital and may lead us to identify ways to improve overall quality of life.
What did we learn about SYMPTOMS of VASCULITIS?
The scores for symptoms of vasculitis from the January 2024 check-in are comparable to the scores in January 2023 and July 2023.
- Most patients reported as having no symptoms of vasculitis (24% with score = 0) over the past 28 days. This is similar to the scores in January and July.
- While the majority of the VPPRN community scored on the lower half of the scale (77% with scores 0-5 on a scale of 0-10), there were approximately 7% scored on the higher end, with scores ranging from 8-10. This is consistent with the ratings in January 2023 and July 2023.
Why the range of responses? We can’t say for sure. More research is needed to better understand why some people do better than others. That’s why it is important for you to check-in with the VPPRN every 6 months – even if there are no updates to report, or if your vasculitis is not currently active – this information is important as we collect information over time. The more data we have, the more answers we can find!
What did we learn about PAIN and VASCULITIS?
We saw similar ratings for pain at the January 2023, July 2023, and January 2024 check-ins.
- Approximately 50% of patients experienced little to no pain on average, with scores ranging from 0-2 on a scale of 0-10.
- Alternatively, almost 30% of patients with vasculitis experienced moderate to severe pain with scores 5 and above in January 2023, July 2023, and January 2024.
Why do some people experience more pain than others? That is a good question and one that the VPPRN wants to understand more as we collect data over time with our 6-month check-in forms.
What did we learn about Members' CURRENT STATE of VASCULITIS?
Network members reported similar responses in July 2023 and January 2024 regarding the current state of their vasculitis.
- About two-thirds of patients in the VPPRN community reported that they are currently in remission. This is encouraging to see.
- However, we saw approximately 25% of patients who reported that their vasculitis is currently active. This is similar to the 24% from July 2023.
To better understand why some patients with vasculitis are in remission and some are not, we need the VPPRN community to continue to provide their data to the VPPRN. The data provided is mobilizing our team of doctors and researchers with the information they need to work towards improving the quality of life for all patients across all types of vasculitis and ages.
How Do You Compare to Others in the VPPRN Community?
Click below and see how patients with each type of vasculitis compare with the VPPRN community as a whole.
Compared to patients with other forms of vasculitis, patients with Behçet’s Disease (BD) reported more flares and higher scores for fatigue, symptoms of vasculitis, and pain at the January 2024 check-in. Additionally, a larger percentage of patients with BD reported their vasculitis as active.
At the January 2024 check-in, patients with central nervous system vasculitis (CNSV) reported similar scores/ratings for flares and symptoms of vasculitis when compared to patients with other forms of vasculitis. Patients with CNSV, however, scored their fatigue and pain higher than others in the VPPRN community. Additionally, a larger percentage of patients with CNSV reported their vasculitis as active.
At the January 2024 check-in, patients with cryoglobulinemic vasculitis (cryoglobulinemia) reported more flares, higher scores for fatigue (on average), symptoms of vasculitis, and pain (on average) when compared to patients with other forms of vasculitis. A higher percentage of patients with cryoglobulinemic vasculitis reported their vasculitis as active as well.
Compared to patients with other forms of vasculitis, patients with eosinophilic granulomatosis with polyangiitis (EGPA) reported similar scores/ratings for fatigue, pain, and current state of vasculitis at the January 2024 check-in. Patients with EGPA, however, reported more flares and scored their symptoms of vasculitis higher than others in the VPPRN community.
Compared to patients with other forms of vasculitis, patients with giant cell (temporal) arteritis (GCA) reported similar scores/ratings for fatigue and members’ current state of vasculitis at the January 2024 check-in. We do see differences in scores for symptoms of vasculitis, with a higher percentage of patients with GCA reporting no symptoms at all. Additionally, patients with GCA reported less flares and they scored their pain, on average, higher than others in the VPPRN community.
At the January 2024 check-in, patients with granulomatosis with polyangiitis (GPA) reported similar scores/ratings for fatigue, symptoms of vasculitis, and pain when compared to patients with other forms of vasculitis. However, there were differences in the reporting of flares and current status of vasculitis, with patients with GPA reporting fewer flares and a smaller percentage reporting active vasculitis.
Compared to patients with other forms of vasculitis, patients with IgA vasculitis (Henoch-Schönlein) reported similar scores for fatigue, pain, and symptoms of vasculitis at the January 2024 check-in. We do see differences in the reporting of flares and members’ current status of their vasculitis.
Compared to patients with other forms of vasculitis, patients with microscopic polyangiitis (MPA) reported similar scores for fatigue, symptoms of vasculitis, and pain at the January 2024 check-in. There were differences in the flares reported and reporting of active vasculitis.
At the January 2024 check-in, patients with polyarteritis nodosa (PAN) reported similar scores/ratings for flares, fatigue, symptoms of vasculitis, pain, and reporting of active vasculitis when compared to patients with other forms of vasculitis.
At the January 2024 check-in, patients with Takayasu’s arteritis (TAK) reported similar scores for fatigue, symptoms of vasculitis, and pain when compared to patients with other forms of vasculitis. We do see differences in the flares reported and reporting of active vasculitis.
Compared to patients with other forms of vasculitis, patients with urticarial vasculitis reported similar scores/ratings for fatigue, symptoms of vasculitis, and pain at the January 2024 check-in. We do see higher percentages of flares reported and active vasculitis among patients with urticarial vasculitis.
At the January 2024 check-in, patients with other/suspected diagnosis reported similar scores/ratings for fatigue, symptoms of vasculitis, and pain when compared to patients with other forms of vasculitis. We do see higher percentages of flares reported and active vasculitis among patients with other/suspected diagnosis.
Thank You!
Thank you to the 1,300+ VPPRN members who shared their health updates with us in January 2023, July 2023, and January 2024!
We appreciate your enthusiasm and continued engagement with the VPPRN!
What’s Next? More Research!
There is still much to learn about vasculitis, and the VPPRN community can change that. The VPPRN is a PATIENT-POWERED network which means that PATIENTS POWER VASCULITIS RESEARCH.
The more patient data our VPPRN community provides, the more answers we can find. Why do some patients do better than others? How can we better understand why these differences exist? The answer is research.
Please stay involved and engaged in the VPPRN, and please continue to share your health updates every January and July.
We are stronger together.
Together we make a difference.
Are you a member of the VPPRN?
Our vision is to improve the health of vasculitis patients by developing early-diagnosis methods, discovering more effective treatments, and finding cures. We are inviting thousands of patients with vasculitis, and caregivers, to come together to learn more about symptoms, share experiences, and to become a part of a research network to improve lives.
It is a whole new way of finding answers for the questions most important to YOU and other patients living with vasculitis.
Questions?
Please note, our research team is here to make participation in this study easy for you. The study coordinator is available for you to contact if you have any questions or concerns. Contact the Study Team at [email protected] if you have questions about the study.
