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.