Patients with neuroendocrine tumors, who may have a much longer life expectancy than those with aggressive tumors, report prioritizing quality of life (QoL) factors, such as remaining independent, rather than longer survival. However, they believe that doctors often do not share their priorities, according to a study published in Journal of the National Comprehensive Cancer Network.
«The most surprising result of our study is that patients with advanced neuroendocrine tumors value measures related to quality of life, such as maintaining the ability to perform daily activities and reducing symptoms, much more than living longer,» Medscape Medical News
«This result really challenges the traditional dogma that patients just want to live longer, what a treating physician might consider the most important outcome for the patient,» comments Li.
Neuroendocrine tumors are rare and normally present with nonspecific symptoms; Normally, patients are only diagnosed when tumors are metastatic and curative surgery is no longer a treatment option, the authors explain.
Despite this, unlike the short survival, of about a year, of many other tumors already metastatic at the time of diagnosis, neuroendocrine tumors can be indolent; median overall survival (OS) is approximately 9.3 years.
Patients with neuroendocrine tumors tend to report worse health-related QoL than the general population.
In this study, researchers enrolled 60 patients with neuroendocrine tumors who completed preference assessments regarding health outcomes, attitudes, QoL, and perceptions in relation to disease prognosis and treatment.
Almost all patients (96.7%) had stage IV disease and 75% had non-functional tumors.Half (50%) of patients were 65-years of age or older and 46.7% were female. The most common site of primary cancer was the gastrointestinal tract (41.7%), followed by pancreas (30.0%) and lung (21.7%).
Being able to choose between health outcomes such as maintaining independence («maintaining the current ability to perform daily activities»), survival («keeping you alive for as long as possible, regardless of your health status»), reducing or eliminating pain, or reducing or eliminating dizziness, fatigue and/or dyspnea, the majority of patients, 46.7%, chose maintaining independence as the most important health outcome.
Only 30.0% of patients chose survival as the most important health outcome.
Among other options, 11.7% of patients selected pain reduction or elimination as a top priority, and the same percentage (11.7%) indicated reduction or elimination of dizziness, fatigue and/or wheezing as the most important outcome.
It is noteworthy that maintaining independence was the most important outcome for younger as well as older patients (46.7% in both cases).
Younger patients were more likely to choose survival (36.7% vs.23.3%) and reduction or elimination of pain (16.7% vs. 6.7%) compared to older patients. They were less likely to reduce or eliminate dizziness, fatigue and/or dyspnoea (0% vs. 23.3%).
Emphasizing their desire for independence, 67% of patients said they agreed with the statement: «I prefer to have a shorter life than to lose the ability to take care of myself», while 85.0% said «For me it is more important to maintain the ability to think rather than live as long as possible».
Importantly, only 51.7% of patients said they believed their treating physician’s treatment goals were in line with their own.
That sentiment may not be limited to neuroendocrine tumors, Li said in an interview.
«The disparity in perceived treatment goals between patients and physicians could be a more general phenomenon, regardless of the aggressiveness of the tumor type,» he says.
«This is a fact in our study, conducted in a population of patients with more indolent tumors, i.e. with a diagnosis of neuroendocrine tumor«.
The evidence suggests that «effective communication between patient and physician is problematic and that such difficulties are not limited to patients with neuroendocrine tumors,» they write.
«These disparities could be alleviated by making shared decisions,» they suggest.
Dr.Li emphasizes that a good place to start is recognition of patients’ strong desire to remain independent.
«I believe that to better match patients’ goals we need to include other outcomes, such as maintaining independence, reducing symptoms or pain, and additional quality of life measures, to the key outcomes to be assessed during the drug development/approval process, in order to normalize these essential considerations in our research process.» States.
The article is an adaptation of the original, written by Nancy A. Melville, which appeared on Medscape.com, part of Medscape Professional Network.
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