If you’re looking for a vasculitis specialist, should you ask your primary care doctor, family members/relatives or friends for a referral? What about tapping into your social network for recommendations? Vasculitis is a disease that requires long-term management so it’s super important that you find a doctor and medical team that you trust and feel comfortable with. In this article, we offer tips on how to find the right healthcare provider for your specific needs.
“Likely a referral from the primary care doctor is going to be the best,” said Audra Horomanski, Assistant Professor, Division of Immunology and Rheumatology, Department of Medicine, at Stanford University. “Vasculitides are rare diseases so most people won’t know anyone else who has had a similar problem, which can make using friends and family more challenging.”
There are a variety of support groups on social media that can also be helpful—especially in the sense of finding a community that you can relate to. “The Vasculitis Foundation also keeps a great list of vasculitis specialists that they work with around the world,” Dr. Horomanski added. “However, the physicians most people have access to depends largely on where a person lives. Taking time off work or finding childcare for a long trip can make getting care far from where you live a challenge.”
Telehealth has greatly improved access to care for patients who live in rural areas or who have significant caregiver responsibilities, but Dr. Horomanski still recommends following up with a provider that you could potentially see in person. “Video visits are great for many things but there are still some conditions that will need to be seen in person,” she said.
Vasculitis can affect nearly every organ system in the body, which means that most patients need a team of subspecialty providers who work together to manage their condition. Dr. Horomanski sees the rheumatologist as the central coordinating doctor for all of these patients. “We are trained to look for symptoms in every organ system and can refer to other subspecialty colleagues as needed,” she said. “Ideally, you want to have a team of doctors within the same system or those who work together well. Communication and coordination of care is key to make sure everything is addressed and nothing falls through the cracks.”
What about doing a little online research prior to meeting with your rheumatologist? “Arming yourself with more knowledge and perspective on the potential diagnosis can be helpful and empowering, but as these diseases vary dramatically in their symptoms and severity, it’s easy to be overwhelmed,” Dr. Horomanski said. She has had several patients tell her that they were convinced they would die or endure permanent disability from research they did before coming to see her and this caused a lot of undue anxiety. Every patient is different, so do your best not to jump to conclusions before your visit.
If you want to research a particular provider’s background, certifications, ratings, etc., most academic centers have profiles on their physicians that list their areas of specialty, research interests, and ongoing clinical trials. “Some will include statements from the physicians themselves, which can give you more insight into their treatment philosophy,” Dr. Horomanski said. “They will typically also include their medical school, residency, and fellowship training, but it is important to emphasize that excellent doctors come from all types of educational backgrounds.”
When you do find a provider, does it make a difference if you can get in right away or have to wait weeks for an appointment? That depends. There are certain conditions that are serious and it’s very important that a patient is seen quickly (within two to four weeks). There are other conditions, however, that are less urgent. “While I wish we could see everyone urgently, the reality is that we need to have availability to see the serious life- or organ-threatening conditions, which does push less severe consults out farther,” Dr. Horomanski said. “The best thing you and your referring doctor can do is to include all of the symptoms and concerns in the referral documents. This ensures that the clinic can accurately assess severity and urgency to be seen.”
At your appointment, it will be easy to forget things during your visit. Dr. Horomanski recommends that you bring a written timeline of your symptoms and previous treatments, as well as any questions you may have. “More questions will come up but this a good starting point. Of course, you want to make sure you feel heard and respected by the doctor and staff,” she added.
What about second opinions? “As a patient, if you have any doubts or concerns, it’s always appropriate to seek a second opinion. This is true at any point in the course of a disease,” Dr. Horomanski said. “Many years in, a second opinion might be helpful to figure out the best way to manage an unusual symptoms or complications. Similarly, it’s OK for your doctor to suggest that you get a second opinion as well.” This doesn’t mean that your doctor is unable to manage the condition, but rather that they are open to thoughts and advice of other providers.
Some of these conditions are so rare that most rheumatologists will only see a handful of cases in their entire career so it makes sense to get feedback from other providers to make sure you are receiving appropriate treatment.
Author: Nina Silberstein