Nurses play a key role in the multidisciplinary approach that is needed to care for patients with neuroendocrine tumors (NETs).
Due to its rarity (NETS occur in approximately 7 in every 100,000 people) and the variance of incidence by primary site (lung, small intestine, rectum, pancreas, appendix, colon, cecum, or an unknown primary), neuroendocrine cancer requires the knowledge and expertise of diverse healthcare experts – especially among nursing professionals.
“The multidisciplinary approach is essential for this disease. You’re going to have multiple nurses that are a part of that team and they are essential because they are the frontline of taking calls for certain types of symptoms for whether someone just had surgery, a treatment, newer treatment with radiation. Having that team within the multidisciplinary team of nurses, nurse practitioners, advanced practitioners, and physicians is absolutely essential for taking care of these patients,” said Daneng Li, MD, medical oncologist and director of the Neuroendocrine Tumor Program at City of Hope.
Bonita “Bonnie” Bennett, RN, BSN, nurse coordinator of the Neuroendocrine Tumor Program at the University of Pennsylvania, agreed, adding that communication across varying fields of oncology is necessary.
“It takes a multidisciplinary team to take care of patients. The nurses need to be communicating with one another from other areas. So, if a patient is getting liver-directed therapy or chemotherapy, we need to be taking care of the patients as a team just like the doctors are,” she added.
At the Healing Net Foundation’s 2019 Summit, nurses, doctors and patient advocates gathered during a breakout session to build upon their discussion from last year: What is important for nurses to learn about NETs?
Based on a previous focus group, the session aimed to:
- Develop curriculum for NET nurse education
- Discuss target audiences and how to reach them
- Identify delivery methods likely to be effective
- Explore incentives to engage participants
- Build measures to show that learning has taken place.
“The generation of doctors that are experts in this field are retiring, so the (Healing Net Foundation) wants to bring young (professionals) in (to train them). It is the same with these new nurses. Who is going to be there to train them? What is it that nurses need to know to understand patients with NETs?” Bennett said. “They need to know about the team and other people who are treating aspects of this disease.”
In addition, the foundation hoped to also improve upon the communication between patients and their healthcare providers – a mission George Fisher, professor of medicine at Stanford University School of Medicine, admits nurses also play a key factor in. “I’m embarrassed to admit the physicians create the communication barriers and the nurses break them down.
“We may say something in a 15-minute discussion, and the family or patient may not understand what we said and feel lost. Oftentimes their first call back is with the nurse, and the more skilled and educated the nurse is about that particular disease, the better they will be at putting everything into context and calming their fears and worries,” he added. “Some of those fears and worries are not evident in a 15-minute discussion. One family member hears one thing and the other hears another, and by the time the week is over there will be panic ensued throughout the group. The nurses are incredibly helpful in that regard.”
Following the meeting, the majority of participants hoped to improve upon patient access, management, education, awareness, and organization about the disease, which is often not talked about.
“It is important because this is a very rare cancer. The average oncologist, practitioner or nurse does not see these types of patients, so there is a lack of awareness of what is the best way to treat these patients and what is really happening in the field in terms of new treatments, diagnostic modalities,” explained Philip Philip, MD, PhD, FRCP, leader of the gastrointestinal and neuroendocrine multidisciplinary team at Karmanos Cancer Institute.
“The Healing Net is really a very good environment to start to think about how we can do better for these patients who are oftentimes diagnosed in a community setting by doctors who have not seen more than a few patients with NETs in their whole career,” he added.