NANETS2025 18th Annual Multidisciplinary NET Medical Symposium NANETS 2025 Population Science Section (10 abstracts)
1College of Public Health, Department of Epidemiology, University of Iowa, Iowa City, Iowa, USA; 2Population Research Core, Holden Comprehensive Cancer Center, University of Iowa, Iowa City, Iowa, USA; 3Department of Internal Medicine, Carver College of Medicine, University of Iowa, Iowa City, Iowa, USA; 4Holden Comprehensive Cancer Center, University of Iowa, Iowa City, Iowa, USA; 5Department of Gastrointestinal Medical Oncology, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA; 6Mayo Clinic, Rochester, Minnesota, USA; 7Medical College of Wisconsin, Milwaukee, Wisconsin, USA; 8ODonnell School of Public Health, UT Southwestern Medical Center, Dallas, Texas, USA; 9Department of Internal Medicine, Division of Metabolism, Endocrinology and Diabetes, University of Michigan, Ann Arbor, Michigan, USA; 10Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah, USA; 11Division of Medical Oncology, Department of Medicine, The Ohio State University Comprehensive Cancer Center, Columbus, Ohio, USA; 12University of Kansas Medical Center, Kansas City, Kansas, USA; 13Division of Oncology, Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA; 14Allina Health Cancer Institute, Minneapolis, Minnesota, USA; 15University of Pittsburgh, Pittsburgh, Pennsylvania, USA; 16Department of Internal Medicine, Division of Hematology/Oncology, Vanderbilt University Medical Center, Nashville, Tennessee, USA; 17Department of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, Gainesville, Florida, USA; 18Department of Surgery, Medical University of South Carolina, Charleston, South Carolina, USA; 19NorCal CarciNET Community, Oakland, California, USA; 20The Healing NET Foundation, Los Angeles, California, USA; 21Neuroendocrine Cancer Awareness Network, Fort Mill, South Carolina, USA; 22Neuroendocrine Tumor Research Foundation, Boston, Massachusetts, USA
Background: Neuroendocrine tumors (NETs) are uncommon, 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.
Methods: The Neuroendocrine TumorsPatient Reported Outcomes (NET-PRO) study is a prospective, multi-institutional U.S. cohort funded by the Patient-Centered Outcomes Research Institute (PCORI), conducted across 14 sites. Adults aged ≥18 years with incident small intestinal (SI-NET), pancreatic (pNET), gastroenteropancreatic (GEP), or lung NETs diagnosed from January 2018 through September 2024 were enrolled using a validated EMR-based computable phenotype. Baseline surveys assessed health-related quality of life (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.
Results: 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 < #10.001) and lower physical, role, and global QoL scores than those with GEP-NETs. Patients with pNETs reported better functioning and lower symptom burden. Diarrhea worsened over time, especially in SI-NETs. Most rated care highly (75.3%) and reported good coordination, but concerns about treatment side effects (80.4%), costs (60.7%), and travel burden (58.8%) were common.
Conclusions: This large U.S. cohort highlights substantial, persistent symptom burden among NET patients, with variation by tumor site and disease duration. Findings support longitudinal assessment of HRQoL in this growing patient population.
Abstract ID #33433