Introducing NET Vitals - Your new NET communication tool!

Introducing NET Vitals

Your new NET communication tool

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As a patient, would you like to have better communication with your doctor?  Would you like to maximize the time spent in your appointment?

For healthcare providers, would you like to have all of your neuroendocrine cancer patients’ vitals in one document?  Would you like to improve your clinic time with the patient to focus on patient needs?

What is NET VITALS?

LACNETS created NET VITALS as a quick snapshot of the most important questions for patients and healthcare professionals to know about neuroendocrine cancer.  NET VITALS is a 20-question tool designed to highlight the vitals of NET cancer, all in one document. This allows the physician and patient to more easily communicate with all of the basics in one place.

Think of NET VITALS as your NET passport.  NET VITALS is a downloadable form which can be printed and filled out or completed as a PDF on a computer.  It helps with record-keeping and prompts for scan image disks and reports.

LACNETS thanks Dr. Dan Li at City of Hope for being our Medical Advisor on NET VITALS. Our goal is that NET VITALS will help patients and providers by empowering patients and improving patient-provider communication.   

Newly diagnosed?

Are you newly diagnosed and want to learn the most important ‘vitals’ about your neuroendocrine cancer?  NET VITALS is a guide to biomarkers, terminology and most common procedures and treatments. In just 20 questions, the patient and their family can learn about what the ‘vitals’ are in neuroendocrine cancer.  It is not expected that the patient will be familiar with all of these terms, or know all of the answers. NET VITALS provides a working document for the patient to understand key vocabulary about their disease and a way to keep track of their status.

Living with NETS?

NET VITALS helps the patient keep current on their disease status and more easily communicate with their physician.  NET VITALS can be particularly helpful when seeing a new doctor as part of the multi-disciplinary team or seeking a 2nd opinion. It’s a shortcut to communicate the patient’s disease status in a ‘snapshot’ and all in one place.  

NET VITALS history

From Lisa Yen, NP:

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 discussion 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:

(1) The patient would become more familiar with their own disease through the process of filling out the worksheet.

(2) 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.