Quality of life and care experiences in a US multi-institutional neuroendocrine tumor cohort

Michael A O'Rorke; Tao Xu; Rhonda R Decook; Bradley D Mcdowell; Brian M Gryzlak; Nicholas J Rudzianski; Kimberly C Serrano; Abigayle M Wehrheim; Udhayvir S Grewal; Chandrikha Chandrasekharan; Joseph S Dillon; Thorvardur R Halfdanarson; T Clark Gamblin; Lindsay G Cowell; Tobias Else; Heloisa P Soares; Vineeth Sukrithan; Sravani Chandaka; Hanna K Sanoff; Fiona C He; David Geller; Robert A Ramirez; Mei Liu; William Lancaster; Josh A Mailman; Heather Moran; Maryann Wahmann; Elyse Gellerman; Elizabeth A Chrischilles; NET-PRO Study Investigators

doi:10.1093/jnci/djag069

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Quality of life and care experiences in a US multi-institutional neuroendocrine tumor cohort

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Quality of life and care experiences in a US multi-institutional neuroendocrine tumor cohort

Michael A O'Rorke, Tao Xu, Rhonda R Decook, Bradley D Mcdowell, Brian M Gryzlak, Nicholas J Rudzianski, Kimberly C Serrano, Abigayle M Wehrheim, Udhayvir S Grewal, Chandrikha Chandrasekharan, …

JNCI : Journal of the National Cancer Institute, djag069

03/10/2026

DOI: 10.1093/jnci/djag069

PMCID: PMC13181830

PMID: 41808486

Appears in UI Libraries Support Open Access

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Abstract

Neuroendocrine tumors (NETs) are rare, heterogeneous neoplasms associated with prolonged survival and substantial symptom burden. However, patient-reported outcomes (PROs) across NET subtypes remain poorly characterized, particularly in real-world settings. This study describes baseline health-related quality of life (HRQoL) and care experiences among patients with gastroenteropancreatic (GEP) and lung NETs, examining differences by tumor site and time since diagnosis. The Neuroendocrine Tumors-Patient Reported Outcomes (NET-PRO) study is a prospective, multi-institutional U.S. cohort of adults (≥18 years) with incident small intestinal (SI-NET), pancreatic (pNET), GEP, or lung NETs diagnosed from January 2018 through September 2024, identified via a validated electronic medical record (EMR)-based computable phenotype. Baseline surveys assessed HRQoL, symptoms, care experiences, and clinical characteristics using validated instruments. Descriptive statistics and standardized mean differences (SMDs) compared responses by NET site and time since diagnosis. Among 2,367 participants (mean age 57.8 years; 57.3% female), 1,974 had GEP-NETs (659 SI-NET, 555 pNET) and 393 had lung NETs. Fatigue (mean 33.0), insomnia (32.5), and diarrhea (25.7) were the most burdensome symptoms. Lung NET patients reported worse dyspnea (SMD = 0.58, p < 0.001) and lower physical, role, and global QoL scores than those with GEP-NETs, while pNET patients reported better functioning. Diarrhea worsened over time, especially in SI-NETs. Most rated care highly (75.3%) but cited concerns about treatment side effects (80.4%), costs (60.7%), and travel burden (58.8%). This large U.S. cohort reveals persistent symptom burden and HRQoL variation by tumor site and disease duration, underscoring the need for longitudinal HRQoL assessment in NET care.

Phenotype

Pancreas

Quality of Life

dyspnea

lung

diarrhea

fatigue

heterogeneity

adult

intestine, small

neuroendocrine tumors

travel

diagnosis

neoplasms

insomnia

persistenceelectronic medical records

health-related quality of life

descriptive statistics

patient self-report

illness length

symptom burden

UIOWA OA Agreement

Details

Title: Subtitle: Quality of life and care experiences in a US multi-institutional neuroendocrine tumor cohort
Creators: Michael A O'Rorke - University of Iowa
Tao Xu - University of Iowa
Rhonda R Decook - University of Iowa
Bradley D Mcdowell - University of Iowa
Brian M Gryzlak - University of Iowa
Nicholas J Rudzianski - University of Iowa
Kimberly C Serrano - University of Iowa
Abigayle M Wehrheim - University of Iowa
Udhayvir S Grewal - University of Iowa
Chandrikha Chandrasekharan - The University of Texas MD Anderson Cancer Center
Joseph S Dillon - University of Iowa, Endocrinology and Metabolism
Thorvardur R Halfdanarson - Mayo Clinic in Arizona
T Clark Gamblin - Medical College of Wisconsin
Lindsay G Cowell - The University of Texas Southwestern Medical Center
Tobias Else - Michigan Medicine
Heloisa P Soares - Huntsman Cancer Institute
Vineeth Sukrithan - The Ohio State University
Sravani Chandaka - University of Kansas Medical Center
Hanna K Sanoff - University of North Carolina at Chapel Hill
Fiona C He - Allina Health
David Geller - University of Pittsburgh
Robert A Ramirez - Vanderbilt University Medical Center
Mei Liu - University of Florida Health
William Lancaster - Medical University of South Carolina
Josh A Mailman - Bennett Aerospace (United States)
Heather Moran
Maryann Wahmann
Elyse Gellerman - Neuroendocrine Tumor Research Foundation
Elizabeth A Chrischilles - University of Iowa
NET-PRO Study Investigators
Resource Type: Journal article
Publication Details: JNCI : Journal of the National Cancer Institute, djag069
DOI: 10.1093/jnci/djag069
PMID: 41808486
PMCID: PMC13181830
NLM abbreviation: J Natl Cancer Inst
ISSN: 0027-8874
eISSN: 1460-2105
Publisher: Oxford University Press
Grant note: UM1 TR004403 / NCATS NIH HHS
Language: English
Electronic publication date: 03/10/2026
Academic Unit: Pharmacy; Epidemiology; Pathology; Fraternal Order of Eagles Diabetes Research Center; Endocrinology and Metabolism; Holden Comprehensive Cancer Center; Internal Medicine
Record Identifier: 9985147201302771

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