Symptom Burden at the End of Life for Neuroendocrine Tumors: An Analysis of 2579 Prospectively Collected Patient-Reported Outcomes

• Published in: Annals of surgical oncology 2019-09, Vol.26 (9), p.2711-2721
• Main Authors: Hallet, Julie, Davis, Laura E., Mahar, Alyson L., Isenberg-Grzeda, Elie, Bubis, Lev D., Myrehaug, Sten, Zhao, Haoyu, Beyfuss, Kaitlyn, Moody, Lesley, Law, Calvin H. L., Coburn, Natalie G.
• Format: Article
• Language: English
• Subjects: Adult; Aged; Aged, 80 and over; Anxiety; Anxiety - diagnosis; Anxiety - etiology; Appetite loss; Death; Drowsiness; Endocrine Tumors; Fatigue - diagnosis; Fatigue - etiology; Female; Follow-Up Studies; Humans; Male; Medicine; Medicine & Public Health; Middle Aged; Nausea; Nausea - diagnosis; Nausea - etiology; Neuroendocrine tumors; Neuroendocrine Tumors - complications; Neuroendocrine Tumors - epidemiology; Neuroendocrine Tumors - therapy; Oncology; Ontario - epidemiology; Pain; Pain - diagnosis; Pain - etiology; Palliative Care; Patient Reported Outcome Measures; Prevalence; Prognosis; Prospective Studies; Quality of Life; Retrospective Studies; Risk factors; Severity of Illness Index; Surgery; Surgical Oncology; Survival Rate; Symptom Assessment - mortality; Terminal Care - statistics & numerical data; Young Adult
• ISSN: 1068-9265; 1534-4681
• DOI: 10.1245/s10434-019-07441-5

Background Given a slow course of disease, end-of-life issues are understudied in neuroendocrine tumors (NETs). To date, there are no data regarding symptoms at the end of life. This study examined symptom trajectories and factors associated with high symptom burden in NETs at the end of life. Methods We conducted a retrospective cohort study of NET patients diagnosed from 2004 to 2015 and who died between 2007 and 2016, in Ontario, Canada. Prospectively collected patient-reported Edmonton Symptom Assessment System scores were linked to administrative healthcare datasets. Moderate-to-severe symptom scores (≥ 4 out of 10) in the 6 months before death were analyzed, with multivariable modified Poisson regression identifying factors associated with moderate-to-severe symptoms scores. Results Among 677 NET decedents, 2579 symptom assessments were recorded. Overall, moderate-to-severe scores were most common for tiredness (86%), wellbeing (81%), lack of appetite (75%), and drowsiness (68%), with these proportions increasing as death approached. For symptoms of lack of appetite, drowsiness, and shortness of breath, the increase was steepest in the 8 weeks before death. On multivariable analyses, the risk of moderate-to-severe symptoms was significantly higher in the last 2 months before death and for patients with shorter survival (