Challenges in Creating a Multidisciplinary Practice for Patients With NETs

David C. Metz, MD

Bringing coordinated multidisciplinary cancer treatment together into one place is ideal to improve care for patients with neuroendocrine tumors (NETs), according to David C. Metz, MD, who spoke to the challenge of establishing a multidisciplinary clinical practice for patients with NETs during a presentation at the 10th Annual NANETS Symposium in Philadelphia, Pennsylvania.

Care for a patient with NETs is very different from that of other solid tumors, and requires a completely distinctive approach, stressed Metz, associate chief for clinical affairs, Gastrointestinal, and co-director of the Neuroendocrine Tumor Center at the University of Pennsylvania School of Medicine. Unlike with most solid tumors, metastases from NETs can make up the bulk of the disease presentation and affect the outcome of the patient the most. NETs management requires a multidisciplinary team approach consisting of such disciplines as surgery, oncology, radiology, pathology, genetics, gastroenterology, and, most importantly, the support staff. It is only by having all of these disciplines come together that a patient with NETs can be appropriately managed.

There are many barriers to care for patients with NETs, beginning with the initial information that is available to a patient online, which is not always accurate, up to date, or appropriate for the individual patient. “Navigating the healthcare system is extremely difficult and overwhelming,” Metz said, with a great lack of integration between the systems.

Additionally, patients often cannot go where they would prefer to go for their care and instead may have to travel a great distance for covered imaging facilities or to reach a Center of Excellence, for example. And while Centers of Excellence for NETs do exist, the criteria by which they are chosen are unclear, and the levels of expertise also vary. Institutions are also usually set up with silos of specialties operating independently, but NETs cover all of these disciplines, and patients may even require interventions that most facilities do not offer. “It’s very hard for the patient to get to the right place,” he said.

Financial concerns over the entire course of the disease can also be debilitating to the patient. “A factor that we don’t talk much about, but that is really, really important is that the costs of care can be absolutely bankrupting for our patients.”

“To address [these] problems, I would suggest that a coordinated multidisciplinary care group in one location is the ideal, and it’s very hard to do that,” Metz said.

In order to create this ideal system to care for patients with NETs, many pieces are required of the institution, so support from the institution is vital. Many options for therapy need to be available, and should be individualized to the needs of each patient. A tumor board to discuss each patient and their options is essential, he said, and flexibility is key. Additionally, he noted that a nurse navigator and other support staff are crucial to help the patient through the system.

“The only way to do this is to have a program navigator identify your patients, then look at all the data together and share the care, so a tumor board is an absolutely essential part of this,” he emphasized.

What is important to the patient from this multidisciplinary center is an early and accurate diagnosis, the best initial intervention and thorough follow-up, and streamlined team management.

Metz used the Neuroendocrine Tumor Program at the University of Pennsylvania as an example, where approximately 14 different disciplines, with a focus on support staff, are focused on each patient. He noted, however, that these disciplines do not need to all be in one place, but can come together in a tumor board, and also that this group should be flexible since not all disciplines are essential to the care of each patient every time. “You have to be flexible, and you have to bring your patient back repeatedly as things change so that the whole team can share in the management and give the best care,” Metz said.

Support staff, including schedulers, precertification specialists, social workers, pharmacists, nurse navigators or patient champions, are the glue that keeps the program running, he said.

He stressed once again that a nurse navigator would play a central role in the establishment of a multidisciplinary practice for treating NETs. This navigator is one who coordinates the patients’ records, establishes communications with other centers and departments, navigates insurance barriers, and manages the tumor board, but should also be aware of clinical trial opportunities and treatment algorithms to guide the patient. “Coordinating all that care and management at other sites is very difficult and requires a champion for the patient,” he said.