“Considering the patient perspective adds further dimension to measuring disease activity,” Dr. Sreih says. “This [aspect of disease] has never been investigated in large vessel vasculitis studies, and it is an area this group has set out to explore.”
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One goal of this current approach is to develop disease-specific tools that apply to large vessel vasculitis patients, given the widespread agreement that generic tools do not capture the full spectrum of large vessel vasculitis disease from patients’ perspectives.
With this better understanding of disease states that are well-defined based on evidence in the literature, as well as data from lab findings, imaging and patient-reported outcomes and physical assessments, Dr. Sreih says this approach is “a major advancement in our understanding of large vessel vasculitis and will potentially have an impact on therapies and also the conduct of clinical trials.”
With clinical trials being conducted based on standardized outcome measures, Dr. Aydin hopes this work will lead to new treatment approaches for large vessel vasculitis patients.
“Because [large vessel vasculitis] has a relapsing-remitting course, physicians in clinical practice managing cases of [large vessel vasculitis] combine subjective clinical data with fairly unreliable laboratory markers and imaging to assess disease activity. On top of this [current approach], it may be very difficult to differentiate damage from active inflammation,” Dr. Aydin says.
However, with a standardized protocol for monitoring patients, when to do arterial imaging and when to change therapies, less variation in practice and clinical trials is possible.
Adding to the significance of this work, incorporating patient perspective into the outcome measures is huge for patients and an important aim of OMERACT—to include input from multiple stakeholders, Dr. Sreih says.
Carina Stanton is a freelance science journalist based in Denver.
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