Many patients with advanced neuroendocrine tumors (NETs) may value preserving their quality of life (QOL) over extending their survival, a small study suggests. 

Most of the patients studied said they would rather retain the ability to care for themselves and retain their cognitive abilities than prolong their lives at the expense of those abilities. These findings were published in the Journal of the National Comprehensive Cancer Network.

The study included 60 adults with advanced NETs. The patients’ median age at baseline was 64.5 years, and 46.7% were women. Most patients were retired/unemployed (41.7%) or disabled/on medical leave (33.3%), but 23.3% were working full-time or part-time. 

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Most patients (96.7%) had stage IV disease, and 75.0% had nonfunctional tumors. Common primary tumor locations included the pancreas (30.0%), small bowel (26.7%), and lung (21.7%). Sixty percent of patients had received at least 1 prior line of therapy.

The patients completed the following tools:

  • The Health Outcomes Tool, which ranks the importance of outcomes
  • The Attitude Scale, which assesses agreement with statements related to health outcomes
  • The Now versus Later Tool, which ranks the importance of QOL now vs 1 year in the future and 5 years in the future
  • The Prognosis and Treatment Perception Questionnaire (PTPQ), which assesses the amount of information patients want to receive about their disease and treatment, patients’ treatment goals, patients’ perceptions of the physician’s goals, and self-reported health status.

On the Health Outcomes Tool, 46.7% of patients rated independence (ie, maintaining their current ability to do daily activities) as their most important health outcome. This was followed by 30% of patients who chose survival for as long as possible regardless of their general health, 11.7% who chose reducing or eliminating pain, and 11.7% who chose reducing or eliminating symptoms of dizziness, shortness of breath, and/or fatigue as their most important health outcome.

On the Attitude Scale, patients consistently valued QOL over survival. Eighty-five percent of patients reported that they would rather live a shorter life than lose their thinking abilities, and 66.7% reported valuing the ability to take care of themselves over a longer life. A little more than one-third of patients (36.7%) said they valued longer survival regardless of QOL.

Most patients were willing to trade current inconvenience or lower QOL for better QOL in the future. Nearly all patients (93.3%) said they were willing to accept more visits to the doctor and dietary restrictions now to decrease the risk of new disease in the future. A better QOL in the future at the expense of experiencing side effects in the present was also preferred by 93.3%.

On the PTPQ, 30.0% of patients said the primary goal of cancer treatment was to extend their life as long as possible, 26.7% said the primary goal was cure, 25.0% said the primary goal was to make sure they had done everything possible, and 10.0% said the goal was to lessen their suffering as much as possible. About half of patients (51.7%) believed they and their oncologist shared the same primary goal.

“Most patients with NETs who participated in this study value QOL-related factors, such as independence and cognition, more than survival as a primary outcome of their treatment,” the researchers concluded. “Concerningly, almost half of patients with NETs believe that they do not have the same treatment goals as their physician.” 

The researchers noted that future studies are needed to better understand the effect of patient preferences on treatment choice and to improve communication with oncologists.

Disclosures: Some study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of disclosures.


Li D, Sun C-L, Kim H, et al. Patient-defined goals and preferences among adults with advanced neuroendocrine tumors. J Natl Compr Canc Netw. 2022;20(12):1330-1337.e3. doi:10.6004/jnccn.2022.7059

This article originally appeared on Cancer Therapy Advisor