VIDEO: ‘Onus’ on providers to educate patients on vasculitis

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In terms of awareness in regard to vasculitis in pregnancy, should it focus more on provider versus patient education? I think that we as providers need to be educated, and I actually do put a lot of the onus on rheumatologists. We’re kind of the, like, central provider for a lot of these patients. We treat kind of whole-body full system issues, and I do really see it as our job as rheumatologists to both educate and facilitate discussions with our patients, but also with our colleagues and collaborators. These are really, really rare diseases in most cases that a lot of providers might see only a small handful of throughout their lifetime, whereas we as rheumatologists see many, many more and can become kind of more familiar and more comfortable with their management. And so, I don't love the idea of, like, putting any onus on the patient to go out and find their own information. I like to approach all of our visits as a discussion so that I can share what I know, I can learn what they know, and we can meet in the middle so that they can understand where the research currently is, what options they have going forward, what their disease might look like, what their life might look like, what their lifestyle, hobbies, activities, being able to go out and function in the world might look like with various different options going forward. So, in terms of pregnancy, I do think that there is definitely a lot of misconceptions in terms of the, like, patient beliefs about different medications, and that's honestly because providers don't do a great job educating patients in most cases on those.

And so, I do think we as providers can do a much better job educating patients on what medications are safe, when is the right time to pursue pregnancy, and those are discussions that should happen essentially every single visit. I make sure that I have a part of my visit notes in all of my patients who could pursue pregnancy at some point, that we're talking about family planning, we’re talking about reproductive issues, we're talking about what their plans are in the next year, the next 5 years, how do we set them up to live the life that they want to live separate from their vasculitis. The vasculitis is something that has happened to them. It is not necessarily who they are.

And so, I want to make sure that they're able to do all of the things that they want to do in life, and if that includes pregnancy, I want to make sure that we facilitate that. But I really do put the onus on providers and rheumatologists for doing that communication.

There are really good patient resources, which I will highlight. I think the Vasculitis Foundation does a wonderful, wonderful job with patient resources and support groups that my patients very frequently take advantage of and I have had very, very positive feedback from. On the Vasculitis Foundation, you’ll also find the Vasculitis Pregnancy Initiative or VPREG, which we encourage all of our vasculitis patients who are pursuing pregnancy or who are currently pregnant to become a part of. It is a prospective database of pregnant vasculitis patients, and it’s the best way that we can to actually nail down these outcomes without looking retrospectively at large databases, which is what we’re currently doing now, and this has lot of value and very high yield. But a prospective database is really the ideal, and so any patient that is interested in contributing to that, we always recommend it. But they do have excellent resources for patients who have vasculitis in general and patients who have vasculitis and who are pursuing pregnancy as well.