Patient-Defined Goals and Preferences Among Adults With Advanced Neuroendocrine Tumors
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Background: Patient preferences (quantity vs quality of life; present vs future health) have not been investigated in patients with neuroendocrine tumors (NETs). The goal of this cross-sectional study was to evaluate patient values toward treatment goals and competing health outcomes among adults with NETs. Patients and Methods: Patients with well-differentiated, grade 1 or 2, advanced NETs starting a new systemic therapy completed 4 tools: (1) Health Outcomes Tool, which ranks the importance of 4 outcomes (survival, function/independence, freedom from pain, freedom from symptoms); (2) Attitude Scale, which identifies the extent to which patients agree with statements related to health outcomes; (3) Now versus Later Tool, which ranks the relative importance of quality of life (QoL) now versus 1 and 5 years from now; and (4) Prognosis and Treatment Perceptions Questionnaire, which identifies the amount of information the patient prefers to receive about their disease and treatment, the patient’s treatment goal, the patient’s perception of the physician’s treatment goal, and self-reported health status. Results: We recruited 60 patients with NETs (50.0% aged ≥65 years; 96.7% with stage IV disease). Primary tumor locations included the gastrointestinal tract (41.7%), pancreas (30.0%), and lung (21.7%). A plurality of patients reported maintaining independence as their most important health outcome (46.7%), followed by survival (30.0%), freedom from pain (11.7%), and freedom from symptoms (11.7%). A total of 67% of patients agreed with the statement, “I would rather live a shorter life than lose my ability to take care of myself”; 85.0% agreed with the statement, “It is more important to me to maintain my thinking ability than to live as long as possible.” When asked to choose between current QoL versus QoL 1 year or 5 years in the future as more important, 48.3% and 40.0% of patients valued their QoL 1 year and 5 years in the future, respectively, more than their current QoL. Only 51.7% of patients believed their physician’s treatment goals aligned with their own. Conclusions: Adult patients with NETs strongly value independence over survival. More communication between patients with NETs and their physicians is needed to ensure that patient preferences are incorporated into treatment plans.
Submitted May 5, 2022; final revision received July 29, 2022; accepted for publication August 1, 2022.
Previous presentation: Results reported in this article were previously presented as an abstract and poster at the 2022 ASCO Gastrointestinal Cancers Symposium; January 20–22, 2022; San Francisco, California. Abstract 509.
Author contributions: Conceptualization: Li. Data curation: All authors. Formal analysis: All authors. Funding acquisition: Li. Investigation: All authors. Writing—original draft: Li, Crook, Zhang, Ballena. Writing—review & editing: All authors.
Disclosures: Dr. Li has disclosed serving as a consultant for Advanced Accelerator Applications, Ipsen Biopharmaceuticals, and TerSera Therapeutics. Dr. Chung has disclosed serving on the speakers’ bureau for Ipsen. The remaining authors have disclosed that they have not received any financial considerations from any person or organization to support the preparation, analysis, results, or discussion of this article.
Funding: Research reported in this publication was supported by National Institute on Aging of the NIH under award number R03AG064376 (D. Li).
Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. The funders had no role in the design and conduct of the study; in the collection, management, analyses, and interpretation of the data; in the preparation, review, or approval of the manuscript; and in the decision to submit the manuscript for publication.
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