Patients with neuroendocrine tumors, who may have a much longer life expectancy than those with aggressive tumors, report placing a higher priority on quality-of-life factors, such as remaining independent, compared with longer survival as a primary treatment goal. However, they often feel that their clinicians do not share their priorities, new research shows.
“The most surprising finding with our study is that patients with advanced neuroendocrine tumors value quality-of-life measures, such as maintaining the ability to do daily activities and reducing symptoms, much more than living longer,” first author Daneng Li, MD, of the Department of Medical Oncology and Therapeutics Research, City of Hope, in Duarte, California, told Medscape Medical News.
“This finding really challenges the traditional dogma that patients just want to live longer, which might be what a treating physician might think is the most important outcome to the patient,” Li commented.
The finding also contrasts with those from other studies involving patients with more aggressive cancers, such as non–small cell lung cancer and advanced melanoma, which found that the highest priority was on overall survival and symptom reduction..
The study was published this month in the Journal of the National Comprehensive Cancer Network.
Neuroendocrine tumors are rare and usually involve nonspecific symptoms, so patients are typically not diagnosed until the cancers are metastatic and curative surgery is no longer a treatment option, the authors explain.
Despite this, in contrast to the short survival of a year or so for many other cancers that are already metastatic when diagnosed, neuroendocrine tumors can be indolent, and the median overall survival is approximately 9.3 years.
However, these patients need to take drugs continuously, and potential treatment-related toxicities are a problem, the authors explain. Patients with neuroendocrine tumors tend to report worse health-related quality of life than the general population.
For the current study, Li and colleagues enrolled 60 patients with neuroendocrine tumors who were being treated at the City of Hope cancer research center. The patients completed preference assessments regarding health outcomes, attitudes, quality of life, and disease prognosis and treatment perceptions.
Nearly all patients (96.7%) had stage IV disease, and 75% had nonfunctional tumors. Half (50%) were aged 65 or older, and 46.7% were women. The most common location of the primary tumor was the gastrointestinal tract (41.7%), followed by pancreas (30.0%) and lung (21.7%).
When given the choice of health outcomes of maintaining independence (“maintaining your current ability to do your daily activities”), survival (“keeping you alive for as long as possible, regardless of what kind of health you are in”), reducing or eliminating pain, or reducing or eliminating dizziness, fatigue, and/or shortness of breath, the majority of patients, 46.7%, chose maintaining independence as their most important health outcome.
Only 30.0% chose survival as their most important health outcome.
For the other choices, 11.7% chose reducing or eliminating pain as their top priority, and the same amount (11.7%) selected reducing or eliminating dizziness, fatigue, and/or shortness of breath as their most important outcome.
Of note, maintaining independence was the most valued outcome for younger as well as older patients (46.7% for both).
Younger patients were more likely than older patients to pick survival (36.7% vs 23.3%) and reducing or eliminating pain (16.7% vs 6.7%). They were less likely to pick reducing or eliminating dizziness, fatigue, and/or shortness of breath (0% vs 23.3%).
Underscoring the desire for independence, 67% of patients said they agreed with the statement, “I would rather live a shorter life than lose my ability to take care of myself,” while 85.0% agreed with the statement, “It is more important to me to maintain my thinking ability than to live as long as possible.”
Importantly, only 51.7% of patients said they believed their physician’s treatment goals aligned with their own.
That sentiment may not be limited to neuroendocrine tumors, Li commented in an interview.
“The disparity of perceived treatment goals between patients and physicians may be a more general phenomenon regardless of the aggressiveness of the tumor type,” he said.
“This was certainly true in our study of a more indolent tumor patient population represented by a diagnosis of neuroendocrine tumor.”
In a previous study that involved 276 lung cancer patients, for instance, the majority reported that their physician communicated “not at all” or “a little bit” on topics related to their diagnosis and treatment, including practical needs and living well, the authors note.
The evidence suggests that “effective patient-physician communication is challenging and that difficulties in this area are not limited to patients with neuroendocrine tumors,” they write.
“This disparity could possibly be alleviated by implementing shared decision-making,” they suggest.
Li elaborated that a good place to start is recognition of patients’ strong desire to remain independent.
“To better align with patients’ goals, I think we need to incorporate other outcomes, such as maintenance of independence, symptom or pain reduction, and additional quality-of-life measures as key outcomes during the drug development/approval process to normalize these key considerations in our research process,” he said.
That will help “to ensure that the treatments we get approved not only help our patients live longer, but also really help our patients live better,” he added.
The study received support from the National Institute on Aging of the National Institutes of Health. Li has served as a consultant for Advanced Accelerator Applications, Ipsen Biopharmaceuticals, and TerSera Therapeutics.
J Natl Compr Canc Netw. Published December 2022, 2022. Full text
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