I remember quite vividly how overwhelmed I felt when my husband was abruptly and traumatically diagnosed with neuroendocrine tumor. Not only were we dealing with the emotional impact of the news, we were overwhelmed with the amount of information we needed to learn about this rare disease. Navigating the NET journey involves much learning as well as seeking the opinion of NET experts.
In February 2018, Giovanna and I had the opportunity to work with many NET experts as part of the Healing NET Summit. One of the main topics was patient-provider communication. It was from those discussions that Giovanna and I first asked the question, “What can we do to become better patients?” As we brainstormed with Dr. Dan Li, the concept of a “NET VITALS” worksheet was born. We imagined that patients could fill out a worksheet with the most important (aka“vital”) information that a NET expert would need to know about their disease. This worksheet would then serve two purposes:
The patient would become more familiar with their own disease through the process of filling out the worksheet.
The NET expert would have a concise document with the most important information about the person’s disease (i.e. “vitals” as in “vital signs”).
The hope was that this would minimize issues with patients coming to see the experts with incomplete information as well as increase the patient’s knowledge and confidence before the appointment. The result would be a more efficient appointment with the NET expert with more time spent discussing the treatment plan.
While this document may feel daunting, the intent is not for it to be filled out easily nor all at one time. Take a few breaths. Break it into chunks. Do a bit at a time. It is understandable that through the process of filling it out, you will have to go and dig through your records. You will discover words that you may not know and need to look them up through the resource links. You will leave some areas blank to discuss further with your doctor.
In April 2018, LACNETS first introduced the NET VITALS tool in a LACNETS workshop. Its first official use was the LACNETS Annual Patient Education Conference on May 19, 2018. It continues to be a work in progress. Our hope is to help both patient and providers with this tool that will empower patients and improve patient-provider communication.
BENEFITS OF FILLING OUT NET VITALS:
Helps you prepare for your NET specialist appointment.
Helps you understand your disease and how this information relates to you.
Helps you get organized by compiling the information and records for your upcoming appointment with your NET specialist.
Clarifies questions you have for your doctor(s).
Helps make your upcoming appointment more efficient.
Written by Lisa Yen, NP, NBC-HWC
Director of Programs & Outreach, LACNETS