Cancer Research

Behind the Research: symptom burden in patients with neuroendocrine tumours

tired woman

In a recent study published in The Oncologist, Dr. Julie Hallet and her colleagues found that many patients facing neuroendocrine tumours (NETs) struggled with symptoms like tiredness and anxiety for many years after diagnosis.

The results of the study, which looked at patient-reported symptom screening data, didn’t surprise Dr. Hallet, a surgical oncologist who specializes in NETs.

“I have heard concerns from many of my patients about symptom burden,” Dr. Hallet said. “These symptoms include pain, tiredness, anxiety and more and they affect how people cope in their daily lives. Our analysis of the patient-reported symptoms data validates what we have seen anecdotally—patients with NETs face heavy symptoms burdens for many years.”

This study looked at Cancer Care Ontario Symptom Screening data over five years and found that more than half of NETs patients reported having moderate to severe symptoms throughout that time.

“The burden is highest at the time of diagnosis and then falls slightly, but then plateaus quite high with patients continuing to report bad symptoms, even at five years from diagnosis,” said Dr. Hallet. “Other studies have examined patient-reported symptoms of other cancers, which tended to be high at around the time of diagnosis, then fall and stabilize at a lower level within the first year after diagnosis.”

Dr. Hallet says symptom burden can be extremely challenging for patients. She hopes her work looking at this patient-reported symptom data can help.

“How can we create a better system so that those who report high symptom burden can get care faster to better manage those symptoms?”

Dr. Hallet answers some questions about this research below:

What are your next steps in your research?

We have looked at who is reporting high symptom burden and where they are in their cancer journey.

Next, we want to look at what happens to them — where are they getting help, if at all? Are they going to the Emergency Room? Are they seeking help from their family physician? Are they accessing supportive care services on their own?

After that, the next step would be to design an intervention or system to ensure that someone reporting bad symptoms gets help quickly and in the right place.

We have all this data; let’s use it to act, so that we know when and where to intervene to help our patients alleviate their symptom burden.

What’s your end goal when you look at patient-report symptoms data and conduct research using this data?

We have these screening tools in place, but if screening is not followed by tailored care to support patients, than are we using the tools correctly?

These screening tools should trigger subsequent support interventions for our patients. Right now, we know that 30 per cent of physicians do not look at the results of symptom screening, and of those who look, less than 50 per cent are using the results to alter treatment plans and supports for their patients.

I want to use the data we have from these symptom screening tools and make it actionable for patients facing neuroendocrine cancer and other cancers.

It would be amazing to come up with a predictive model and interventions, where a red flag system highlights patients who are struggling with symptoms and sets off a series of events that get them the symptom management care they need.

Why is this kind of research important?

I am not inventing a new drug or a new technology; this work will not be curing cancer. But this kind of research identifies gaps in care and ways we can do better. It can have an impact right now for those undergoing cancer treatment.

About the author


Alexis Dobranowski

Alexis Dobranowski is a Communications Advisor at Sunnybrook.