Patient-defined goals and preferences among adults with advanced neuroendocrine tumors.
Authors: Li Daneng , Sun Can-Lan , Kim Heeyoung , Crook Christiana , Zhang Ya-Han , Allen Rebecca , Ballena Richard , Hyder Shadman , Koczywas Marianna , Chung Vincent , Lim Dean , Katheria Vani , Hurria Arti , Dale William , Singh Gagandeep 
Published: January 2022

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Background: Patient values toward treatment goals and competing health outcomes among adults with neuroendocrine tumors (NETs) are not well understood. The goal of this study was to identify NET patient values towards treatment goals and health outcomes. Methods: Patients with well-differentiated, grade 1/2, advanced NETs starting a new systemic therapy were recruited at a National Cancer Institute-designated cancer center. Patients completed four tools: 1) Health Outcomes Tool: ranks importance of four outcomes (survival, function, freedom from pain, freedom from symptoms); 2) Attitude Scale: identifies the extent to which patients agree with statements related to health outcomes; 3) Now versus Later Tool: ranks relative importance of quality of life (QOL) now, one year from now, and five years from now; and 4) Prognosis and Treatment Perceptions Questionnaire: identifies the amount of information patients prefer to receive about their disease and treatment, patient’s goal of treatment, physician’s goal of treatment (patient’s perception), and self-reported health status. Results: Sixty patients (50.0% ≥65 years) completed the questionnaires. Ninety-seven percent had stage IV disease. Primary tumor locations included gastrointestinal tract (41.7%), pancreas (30.0%), and lung (21.7%). Sixty percent of patients had received at least one prior systemic therapy. Only 30.0% of patients chose survival as their most important treatment outcome on the Health Outcomes Tool. The remaining 70.0% chose maintaining independence (46.7%), freedom from pain (11.7%), and freedom from symptoms (11.7%) as their most important health outcome. Similarly, on the Attitude Scale, 66.7% of patients agreed with: “I would rather live a shorter life than lose my ability to take care of myself”; 85.0% agreed with: “It is more important to me to maintain my thinking ability than to live as long as possible.” Ninety-three percent of patients agreed with: “I am willing to have side effects right now if it means I could have a better quality of life in the future.” Moreover, on the Now versus Later Tool, 48.3% of patients considered QOL one year in the future more important than their current QOL; 40.0% considered QOL five years in the future more important than their current QOL. On the Prognosis and Treatment Perceptions Questionnaire, only 30.0% of patients chose “To extend my life as long as possible” as their primary treatment goal, but 40.0% believed survival was their oncologist’s primary treatment goal. Furthermore, only 51.7% of patients believed they had the same treatment goal as their oncologist. Across all questionnaires, there were no significant differences between the responses of younger and older patients. Conclusions: NET patients value independence more than survival. More communication between NET patients and physicians is needed to ensure patient preferences and values are incorporated into treatment plans.