What is the Vascular Anomalies Center?
The Vascular Anomalies Center is a group of clinicians (doctors and nurses and support staff) who come from multiple different clinical disciplines who are focused in their clinical and academic careers on treating, studying and advancing the care of patients with blood vessel tumors and malformations.
Steven Fishman, MD
The Vascular Anomalies Center is a multidisciplinary clinic made up of clinicians with an interest in patients with vascular tumors and vascular malformations. The physician team members represent approximately 17 medical and surgical specialties. We also have dedicated nurse practitioners and a social worker. We run weekly multidisciplinary clinics (with the exclusion of the fourth Friday of each month) as well as weekly nurse practitioner-run clinics, and multidisciplinary conference reviews. These conference reviews of free of charge to patients and allow a unique opportunity for patients that live at a distance to Boston to receive guidance and recommendations prior to, or instead of, making the trip here. If patients desire treatment here, conference provides an opportunity for pre-treatment education and discussion.
Erin Spera, MS, CPNP
How is the Vascular Anomalies Center coordinated?
Because we are very interdisciplinary, there’s no ownership by department. There needs to be central coordination, and we’ve worked out the model of having what I call central personnel. We have two nurse practitioners who focus only on vascular anomalies. We have a third nurse practitioner who works in the interventional radiology division but focuses almost exclusively on the care of vascular patients from an interventional perspective. We have two administrative personnel and one social worker. This group really serves as the central kernel of the Center. When any of the doctors receive an inquiry (usually from our colleagues from someplace else in the country or the world about a patient that they want assistance with or could potentially refer), we can forward the inquiry to the central personnel who are expert at collecting the relevant information and letting the patient or their doctors know what the options are, how we might help assess them or treat them.
Steven Fishman, MD
What different specialties work in the center?
Our center includes representatives from most pediatric sub-specialties who have taken an interest in vascular anomalies, including myself. I interact with pathology and multiple radiology disciplines for diagnosis clarification. We collaborate with every surgical discipline – general, neurosurgery, orthopedics, plastic surgery and others. Dermatologists are involved in many cases, both for diagnosis and for therapy. Other medical specialties are involved if their experience lends itself to a particular patient; if the area of your body that’s most affected is your stomach or intestines, we might need a gastroenterologist. If you have a lung problem we have a pulmonologist, if you have heart problems, we have a cardiologist, etc. We even have a dedicated anesthesiologist who directs anesthesia care for procedures for our patients.
Cameron Trenor, MD
Dermatologists are experts at diagnosis of cutaneous lesions, they’re also interested in associations with internal lesions. I work very closely with Dr. Marilyn Liang. It’s interesting that when we see a patient together, we immediately have the same “eye wink” diagnosis. Steve Fishman, a pediatric surgeon, is equally the diagnostician for skin as he is for the viscera. Dr. Cameron Trenor, a hematologist/oncologist is advancing from the periphery of his field. Often anomalies are referred to hematologists and oncologists. There may be a bleeding disorder, such as in Kasabach–Merritt phenomenon that occurs with kaposiform hemangioendothelioma. Dr. Trenor is very excited about the possibility of someday using medical therapy, not only to control tumors, but possibly to control malformations. We call upon specialists from every anatomic area; if it’s a pulmonary problem, we often ask a pulmonologist. Dr. Kasser and Dr. Spencer, orthopedic surgeons, are major players in our center. We have so many problems in the limbs, the joints, and in terms of overgrowth. It is not understood why the tissues overgrow and why limbs get longer and fatter.
John Mulliken, MD
What are some of the responsibilities for the nurse practitioners in the center?
The core group in the Center includes Erin and myself as the two nurse practitioners with two administrative assistants and a social worker. We deal with the day to day responsibilities of caring for patients with vascular anomalies. That includes intake of new patients, telephone triage, responding to calls from patients, families, and physicians with questions or referrals, preparation for our weekly conference at which we review patients from all over the world, coordination of care for patients coming to Boston Children’s Hospital for treatment, and preparation for our interdisciplinary clinics. We see patients in both the Vascular Anomalies Clinic and NP clinics and we are part of the team that cares for vascular anomalies surgical inpatients. We do a lot of communication with patients and families and physicians, either via the phone or via email. We write letters following the interdisciplinary conference to send back to the referring physician, patient, or family, providing information about the conference review and what recommendations were made.
Mary Beth Sylvia, MS, FNP-BC
It might be helpful to elaborate on the role of triaging patient information. In terms of our conferences, we receive a high volume of patient inquiries (via telephone, email, and mail) each week. Part of the role of the nurse practitioners is to review the medical history and current concerns and decide how urgently patients should be reviewed in conference. We consider factors such as the ages of patients, if they are currently hospitalized, number of infections, and bleeding risk. For example, if we receive a request for advice from an outside hospital caring for a sick baby on a ventilator with significant risk factors, we try to review as soon as possible. If we receive a call from an established patient who is seeking conference review in an effort to learn of any new treatments that might be available but are otherwise doing well, we would likely give them the next available date. Conferences tend to book out at least 6-8 weeks from the time the completed packet of information is received. For families that have been given a different diagnosis previously or who have had trouble finding the proper specialists, the triage process can be frustrating. We do our best to educate families and support them during this time. Triage can be quite challenging given that we are a major international referral center for Vascular Anomalies.
Erin Spera, MS, CPNP
What are some of the responsibilities for a social worker in the center?
I see my role in the Vascular Anomalies Center in two different categories. If families are coming to VAC for clinic or treatment I consider – how are the families traveling here? Where are the families staying while they’re here? What are the family’s financial resources? These are things that many social workers do and I think in some ways these are more traditionally viewed aspects of what a social worker does. The other part of my role is to work with patients and families about coping with a vascular anomaly. For example, how do parents talk to children about having a vascular anomaly that makes them look different? How do parents talk to children about being in school? How do teenagers cope? I discuss this and other general coping needs of patients and families.
Brooke Corder, MSW, LCSW
How has the center changed over time?
We’ve gotten more organized; we’ve gotten more up-to-date in our administrative centralization. The burgeoning of the web and digital technology has allowed us to provide more information to the world on the web and to access us electronically almost any time of the day. We’ve also added more specialties. We now have participation by nearly every conceivable type of specialist in medicine. We’ve always had a very strong scientific component, but we’ve continued to expand it with multiple scientists and thankfully experts in multiple cities cooperate with us… In the radiology department, we’ve gone from one radiologist to five interventional radiologists including one who specializes in neurointerventional radiology, so we have a broader array of expertise. Although we’re doing more complex surgery, some of the patients that used to have surgical procedures now can have less invasive procedures in radiology. Similarly, we’ve expanded our laser options from what used to be zero to Marilyn Liang in dermatology doing some pulsed dye laser for superficial stains in the skin to now a couple of radiologists and myself and one plastic surgeon doing more invasive laser treatments, including in body cavities. So, gradually we’ve expanded our personnel and our armamentarium.
Steven Fishman, MD