Multi-disciplinary Vascular Anomaly Centers
When looking for a physician to manage and treat, hemangioma, vascular malformation, PWS, KT, PHACES, and other vascular anomalies, there are several key things to consider. Whether you choose a large medical center, university based center or a private practice physician the center should offer a comprehensive multidisciplinary approach to treatment. The center should have a physician staff with experience, dedication and interest in the diagnosis and current treatment modalities available. There should be coordination with a variety of support services and scientific research labs. Establish financial aspects of the treatment including insurance and payment plans. Patients need to determine the philosophy in the treatment of vascular anomalies used at the clinic and evaluate if the specific center is the best match for their specific diagnosis.
Ideally a Vascular Anomaly Treatment Center would offer a comprehensive and multidisciplinary group from the following medical disciplines.
* Dermatology * Plastic surgery * ENT (otolaryngology) * Surgery * Hematology/Oncology * Dental/Periodontal * Pediatrics * Psychology/Social Services * Radiology ** Neurology/neurosurgery ** Ophthalmology ** Orthopedics
** denotes a medical discipline that is available for specific cases requiring the area of expertise
While large medical centers and university based hospital centers would have direct access to all of these disciplines there are many smaller clinics and private practice physicians that offer excellent medical care that refers patients and consults with the larger centers for complex issues.
More important then the size of the clinic; is the program should have a dedication, interest and physicians experienced in the diagnosis and treatment of vascular anomalies and the syndromes associated with these lesions. The center should be apprised of current terminology and new approaches to the management of vascular anomalies. Physicians should be board certified and have completed a Fellowship following their residency that included training in the management of vascular anomalies. Not all residency programs include training in hemanigoma and vascular malformation. In addition physicians can receive continuing education in vascular anomalies through programs offered by the International Society for the Study of Vascular Anomalies.( ISSVA)
In addition to the physicians the VAC should offer access to a variety of support services for patients and families. These services include patient advocacy, social services, patient education materials and non-profit organizations. Many VAC are coordinated by a Nurse manager assigned to the program. The nurse manager is a vital part of the clinic. The nurse manager assists the patient and family with education about diagnosis and treatment, answers questions about procedures and post-operative care and serves as a liaison between the center and the other support services.
There are several philosophies to the treatment of vascular anomalies. Some centers are conservative and prefer a careful observation of diagnosed infants with vascular anomalies and others offer early and aggressive management with a variety of treatment modalities. Today treatments available for vascular anomalies and the related syndromes include medical management, laser treatment, surgery, scelerotherapy and physical therapy procedures. A VAC should include physicians experienced in these treatment options and specifically how they are used to manage vascular anomalies. Since hemangioma and vascular malformations vary from patient to patient the treatment philosophy employed by the center should offer individualized treatment plans based on the size, location, complexities and potential for complications for the patient.
Many centers are affiliated with or collaborated on scientific research in order to understand the biology of vascular anomalies and to modify and improve treatments currently used. The National Institute of Health and other private groups offer grant funding for research. Some clinics collaborate with the university based research labs providing lab specimens and data for the research. Collaborative research allows the physicians in private practice, small clinics or in the large centers to all be involved in the large grant funded research projects. There are many excellent clinics that are not directly involved with research, it is important that these facilities are apprised of the new approaches and methods used in the treatment of vascular anomalies that come from the research. These studies are published in the peer review medical journals.
Once a VAC is identified, the experience and specialty of the physician is considered by the patient or family for managing their individual hemangioma or vascular malformation and the availability of support services are incorporated into the treatment plan the patient and family should consider several questions before making their final decision.
- Does the Center offer a variety of treatment modalities?
- Does the Center provide post surgical support and direction?
- What is the complete treatment plan and expected time line for treatment?
- What type of surgical or laser techniques will be used to manage this patient?
- Will prosthetics be used and are they directly available from the center?
- Can the patient be monitored by the local primary care doctor for lab work, blood pressure and other routine testing in between visits to the VAC?
- Are there other parents/patients of the VAC available to talk to prior to treatment?
- What form of payment does the VAC accept?
- Which Insurance Companies do they participate with?
- Does the VAC offer a payment plan for cash patients?
- Will the VAC assist with insurance appeals?
Choosing a physician or team of physicians to manage and treat a vascular anomaly is important for the overall success and satisfaction of the patient. Considering the medical disciplines needed and provided for care, treatment methods used, support services offered, philosophies employed in treatment and overall individualized treatment offered will increase patient satisfaction.