What sort of cases do you see?
Our pattern of referrals has changed through the years. Through education of local physicians and referring teams, we see fewer “simple” anomalies like infantile hemangiomas. This is true in our second-opinion conference and in clinic. Currently, we see a patient group enriched for complex syndromes with vascular anomalies and other patients for whom management is a significant challenge, including lymphatic disorders and arteriovenous malformations.
Cameron Trenor, MD
Why do you see so many rare cases?
We are the largest referral center in the world for vascular anomalies. We are privileged to see many rare patients because we have been doing this for many years (established in 1976). While some patients are local, a remarkable number are referred to us from many miles away. A recent project studying a vascular tumor called a kaposiform hemangioendothelioma illustrates this well. This is a very rare disease. It tends to present in infancy and occurs in about 1 in 100,000 kids. Most other places have seen fewer than 5 of these, and we have over 200 cases in our database from over the years. What we learned going through [the database] is that we have patients from 30 states, and we have patients from 15 foreign countries, and they’re really from all over.
Cameron Trenor, MD
How are patients referred to the Vascular Anomalies Center?
The referral pathways are actually very diverse. First is internal referral from inside the hospital. Different clinics see these patients and once a vascular anomaly is suspected or diagnosed, the child will be referred to the Vascular Anomalies Center.
The second one is local and regional patients. They can directly contact the Vascular Anomalies Center and refer the patient, or they can contact physicians who work with the VAC. We also receive international consults and referrals. At the end, these patients will be evaluated by the VAC team and entered into the database.
Ahmad Alomari, MD, MSc, FSIR
Typically the first contact for our patients are the nurse practitioners that are up in the Vascular Anomalies Clinic, Mary Beth Silvia and Erin Spera. We have a website that kind of advertises it, and that tends to be a fairly steady draw of patients. They see our website, see the conditions that we treat, and then Erin or Mary Beth will get a phone call or a letter. The other way is doctors on the outside that basically say, “We’ve dealt with this patient. We don’t know what to do. We don’t have the facilities or the expertise to treat these lesions.” That’s the other way that we see patients come in through.
Horacio Padua, MD
Patients are referred to us by pediatricians and many other specialists. We prepare for their coming in our Wednesday night consultative conference. We make sure we have all the data that’s available. Often we need to see them in order to look at and touch the lesion. We need all our senses in order to make a diagnosis and formulate the best possible plan. Clinic visits are arranged by our nurse practitioners. People call the center every day. The data is collected by email; often the radiologic data has to be by CD. We see the patients on Fridays. The nurse practitioners take the initial history and perform the first physical examination. Often they’ll assign more than one specialist (for example the dermatologist, surgeon or the radiologist) to next see the patient, and there’s no battling over patients. The more complicated they are, the more difficult it is, the more likely they will see everybody.
John Mulliken, MD
What is the Wednesday night referral conference?
We have a weekly conference on Wednesday nights where all of the disciplines get together and there’s a list of about 8-10 patients a week where we go essentially consult for free based on the information that is sent to us. We request the patients send us a picture (both of their face because sometimes we want to see what their face looks like as well as the lesion itself), any sort of radiology or imaging studies, the medical records, what your doctors might have said or done already, the questions that you have, what can we answer for you… That then all gets collated by the nurse practitioners and then they get presented at conference.
Horacio Padua, MD
We get together every Wednesday night. We all get in a room and review 8-12 patients a week from around the world in a very organized, interdisciplinary sort of academic setting. In order to be presented to that conference, the families and their doctors forward us clinical histories which our nurse practitioners take by phone and email. We collect photographs, imaging studies of all different types, biopsies if they exist (they send us the tissue in microscopic slides), endoscopic views, and whatever else important might exist before the conference. The information that requires sub-specialty expertise is sent to those people, mostly radiologists and pathologists. Then we come together on Wednesday night after everything has been pre-reviewed, the nurse practitioners read the history, show a PowerPoint of the photographs, sequentially if they have history of old photographs and the current, and then the radiologist shows the imaging studies, and then we all debate what we think the patient has or might have. If there’s pathology then we look at the slides and we try and come to some consensus about what the patient’s status is, just as if the patient were in the room with us. We provide information back to the patients, their families, and their doctors, wherever they live in the world; what we think we know, what we’re not sure about, and what information they might try to gather to be more complete. We’ll also make recommendations about prognosis and potential options for treatment if treatment is of potential benefit. If a case is emergent, we will review patient data any day that is necessary.
Steven Fishman, MD
What type of recommendations do you make at conference?
If it’s a relatively straightforward lesion, we’re at a point in our professional relationship where even the nurse practitioners know, “We don’t necessarily need to review this patient with all the people in the room. We can just send this patient down to IR and have them look at it and treat the lesions.” The nurse practitioners in the VAC will then communicate with the nurse practitioners in IR, and they then will give the referral to us. Once they’ve been reviewed at the Wednesday conference, more often than not we’ll send you a consult, saying either, 1) “You’re doing the right thing, keep going,” 2) “You’re probably not doing the thing we would do. This is what you should do,” or 3) “If you’re not getting satisfaction from where you are, come and we’ll see you in our clinic,” which is the clinic we have every Friday.
Horacio Padua, MD