Maintaining independence was found to the be the most common health care goal in patients with stage 4 neuroendocrine tumors, a recent survey found.
A survey of patients with stage 4 neuroendocrine tumors found that more patients valued maintaining independence as the most valued health outcome over prolonged survival — highlighting a potential disconnect between patients, the clinicians who treat them and the research endpoints for the drugs to treat the disease.
In a recent interview with CURE®, study author Dr. Daneng Li, associate professor in the Department of Medical Oncology and Therapeutics Research at City of Hope, discussed these findings, and offered advice to patients and caregivers on navigating conversations regarding treatment goals.
CURE®: Can you explain your research on the goals of patients with neuroendocrine tumors and why this was important to look at?
Li: We had a lot of conversations with various different types of patient advocacy groups, and we felt that sometimes there might have been a disconnect between physicians, as well as their patients, and also their caregivers.
A lot of times, what we found out in these various meetings that physicians, obviously, oftentimes wanted to focus on helping their patients live longer. But what we were hearing from the actual patients and their caregivers was that they really want to also live better — and sometimes these can be competing outcomes, and we really wanted to do this research to see what patients might choose if they had a choice between what they wanted to get out of their treatments.
What were your study findings?
Our findings from our research were actually a little bit surprising to us.
We asked patients with a diagnosis of advanced neuroendocrine cancer, “what was your No. 1 priority with your treatment?” And, specifically, we gave them four primary choices, whether or not they wanted to maintain physical independence; whether or not they wanted to live as long as possible; whether or not they wanted to maintain overall mental cognition; and whether or not they want to alleviate symptoms of the disease, such as pain, as well as fatigue.
We found that an overwhelming number of patients chose maintaining independence as their No. 1 priority, and that survival was not the largest choice. And that indeed, 70% of patients actually chose one of these other outcomes as the most important priority when they're going on to treatment, compared to 30% of patients that listed living as long as possible as their number one priority.
I think this really sets the stage to say that traditionally, when we're doing research on development of new drugs, we always have living as long as possible as the major endpoints of our research with drug development. This really highlights that maybe we have to go beyond that now, like whenever we're getting drugs developed and ultimately approved, we have to think about these other endpoints that patients want. And drugs should be held accountable to that higher standard and have to meet these endpoints as well, because this is really what our patients with neuroendocrine tumors are really telling us in terms of what they value.
What is your advice for patients who are navigating these conversations with their care teams?
My advice to patients — as well as their caregivers — with this diagnosis is really to have a very upfront and honest discussion with your providers, and recognize that many of these discussions will be very challenging, because … sometimes there can be kind of this tradeoff in terms of trying to decide really what is most important to you.
It really matters to patients, as well as caregivers (to have these conversations), because as physicians, we certainly want to do what is best for our patients, and we can't do that unless we are really understanding on a very upfront basis, what patients really want. Sometimes it might be that a treatment might not make sense, depending on what the goals of the patient is. To have that very detailed and honest discussion, from the very get go will really help patients as well as providers really come together to provide a treatment plan.
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