Organization and Key Roles
The organization of a VA-MDC may vary based on the local community’s needs, resources, and model employed, but there are several key features that each group should consider. This includes a core group of clinical providers, a team coordinator, a multidisciplinary conference, and a process for streamlining referrals and treatment recommendations. Recognizing that each center will start off with different resources, we provide recommendations for roles and resources that are considered essential and those that can be added as a successful program grows (Tables 1 and 2). A recent practice survey of 25 pediatric hematologists-oncologists through the American Society of Pediatric Hematology-Oncology, showed significant practice variations amongst national vascular anomalies teams (Table 3). This demonstrates how various groups have adapted to the specific needs and resources of their medical community. We also highlight a comparison between our two programs (Figure 3). The Vanderbilt program is still in a growing and developing phase, compared to the more mature and established program at Children’s Healthcare of Atlanta (CHOA). Together, these examples may provide a resource and roadmap for pediatric hematologists-oncologists looking to start or grow their vascular anomalies program.
A crucial role within any VA-MDC is that of the clinic or program coordinator. Because of the multidisciplinary nature of the team, there must be at least one team member whose role is to oversee and organize care for patients. This individual must organize providers’ schedules and patient appointments in order to take this burden off of the patient and family. The coordinator also facilitates conferences, manages referrals, and ensures treatment recommendations are carried forward. The role of the coordinator must be understood to be the cornerstone of the patient’s experience. This person serves as the point of contact, supporter, and often cheerleader for families who are under immense stress. If the coordinator is able to conceptualize themselves as a patient advocate, they will take ownership of this patient population, reaching out to support individual patients, searching for areas of opportunity for team research and networking, and promoting the team within the healthcare system. Because care coordination is so crucial, larger programs may need more than one individual to fill this role. The background expertise for a coordinator may be variable and based upon the needs of a specific team within the framework of its institution. An individual with an administrative background can be excellent in this role but will be limited in terms of clinical knowledge and ability to appropriately triage referrals. A coordinator with a nursing background may have the added faculties to evaluate consults, place orders for imaging or lab work, and monitor clinical response to therapy. An advanced practice provider (APP), such as a nurse practitioner (NP) or physician’s assistant (PA), will be able to provide more advanced support in these areas as well as the ability to conduct clinic appointments for appropriate follow up patients. These various responsibilities of the coordinator role may be filled in a titrated fashion based on the needs and resources of the institution. A center with a relatively small patient volume may require only one administrator working closely with the physician providers, whilst a high-volume center may have an administrator and clinical providers working together in coordinator roles.
A successful VA-MDC requires the involvement of a few key physician subspecialists, though this may vary depending on the relative strengths, clinical interests, and training backgrounds of involved providers. Even within smaller settings, it is essential to develop a core group of physicians to review each case, see patients with urgent issues, and refer to other specialists as the need arises. This core of providers may be distilled to 1) a medical provider, 2) a surgeon, and 3) an interventional radiologist. The medical provider must have experience using the various pharmaceutical treatments available to patients, knowledge of the potential medical complications of these disorders, and the ability to facilitate genetic testing and interpretation. The surgeon must be able to provide an expertise in the anatomic ramifications of vascular anomalies throughout the body and enumerate the relative risks and benefits for surgical intervention. If this individual does not perform the recommended procedures, they may have relationships with specialists in other disciplines with those pertinent skills. The interventional radiologist must be familiar with and be able to perform minimally-invasive, percutaneous, and endovascular therapies, and discuss potential risks and benefits of such procedures. If an additional diagnostic radiologist is not a member of the team, the interventional radiologist should be able to also recommend and interpret imaging of vascular anomalies and facilitate discussion within conferences in a manner similar to a tumor board. The core physician group must be committed to the concept of team care as well as to maintaining current knowledge of the rapidly evolving research and progress in the field. As the program grows, additional specialties can be incorporated into the group. While the array of specialists may be wide, it is certainly not necessary for every provider to see every patient. The roster of appointments should be tailored to each individual case. While not available at every center, there is increasing need for the involvement of a geneticist or genetic counselor within a VA-MDC. As the vascular anomalies community continues to identify more underlying molecular mechanisms, genetic testing is rapidly becoming standard of care to accurately diagnose, prognosticate, and outline therapeutic options for patients. We are confident that the role of geneticists will continue to increase within VA-MDCs over coming decades.