Neuroendocrine tumor disease state and PROMIS health-related quality of life scores.

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6118 Background: Health-related quality of life (HRQL) can be disrupted in patients (pts) with malignancies. The objective of this study was to compare the HRQL burden of pts with neuroendocrine tumor (NET) in different disease states relative to the general population. Methods: Pts with NET were invited via email to participate in an online anonymous survey. The survey consisted of demographic and disease-related questions and two standardized measures of HRQL (RAND-36 and PROMIS-29). Scores for U.S. general population are normalized to 50. PROMIS scores were compared using analysis of variance among 3 groups: pts with no tumor currently present (e.g., surgically removed)—no current NET; pts with tumor that has not been surgically removed or has come back after surgery—current NET, but without carcinoid syndrome; current NET with carcinoid syndrome. Score differences of 2.5-5.0 points are generally regarded as clinically meaningful. Lower scores on the physical function and social role scales of the PROMIS indicate worse HRQL. Higher scores on other scales indicate worse HRQL. Results: A total of 663 pts participated and demonstrated worse HRQL scores compared to the general population on all subscale scores of the PROMIS-29 (all p<.01). Of these, 526 provided complete information on current NET and carcinoid syndrome. 443/526 (84%) pts had NET present, of these, 328/443 (74%) had carcinoid syndrome. Compared to pts with no current NET, pts with current NET had significantly worse HRQL scores and those with carcinoid syndrome reported the worst (Table, all p<0.01). Conclusions: Pts with current NET and carcinoid syndrome report worse HRQL compared to pts without carcinoid syndrome, which in turn report worse HRQL than those without current NET. Optimal management of NET and carcinoid syndrome may significantly improve HRQL among pts with NETs. Further analysis of treatment effect on HRQL is warranted. Mean PROMIS- 29 scores No current NET n = 83 Current NET, no carcinoid syndrome n = 115 Current NET + carcinoid syndrome n = 328 All n = 663 Physical function 52 47 43 45 Anxiety 51 53 55 54 Depression 48 50 53 52 Fatigue 48 52 57 55 Pain interference 46 50 54 52 Sleep Disturbance 48 49 54 52 Social role 53 48 45 46 Scores for U.S. general population normalized to 50. Author Disclosure Employment or Leadership Position Consultant or Advisory Role Stock Ownership Honoraria Research Funding Expert Testimony Other Remuneration Novartis Novartis Novartis Novartis