NANETS2025 18th Annual Multidisciplinary NET Medical Symposium NANETS 2025 Other Section (13 abstracts)
Distinct Sociodemographic, Symptom, and HRQoL Profiles in Early-Onset Neuroendocrine Tumors: Insights from the NET-PRO Study
Udhayvir Singh Grewal, MD3,4, Tao Xu,PhD1,4, Rhonda R DeCook, PhD1, Bradley D McDowell, PhD1,2,4, Brian M Gryzlak, MSW, MA1, Nicholas J Rudzianski, BS1, Kimberly C Serrano, BA1, Abigayle M Wehrheim, BS1, Chandrikha Chandrasekharan, MBBS3,5, Joseph S Dillon, MB BCh3,4, Thorvardur R Halfdanarson, MD6, T Clark Gamblin, MD7, Lindsay G Cowell, PhD8, Tobias Else, MD9, Heloisa P Soares, MD, PhD10, Vineeth Sukrithan, MD11, Sravani Chandaka, PhD12, Hanna K Sanoff, MD13, Fiona C He, MD14, David Geller, MD15, Robert A Ramirez, DO16, Mei Liu, PhD17, William Lancaster, MD18, Josh A Mailman, MBA19, Heather Moran, MEd20, Maryann Wahmann21, Elyse Gellerman, MHS22, Elizabeth A Chrischilles1,4, Michael O’Rorke, PhD1,4 & NET-PRO Study Investigators
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; 8O’Donnell 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: The incidence of neuroendocrine tumors (NETs) has increased over the past four decades, particularly among young individuals (age <50 years). Data from other malignancies have demonstrated that earlier onset may be associated with distinct disease biology and unique care needs; however similar data among patients with early-onset NETs (EO-NETs) are lacking. We sought to investigate differences in sociodemographic and clinicopathological profiles, HRQoL and symptoms among patients with EO-NETs compared to average-onset NETs (AO-NETs) using a large multi-institutional cohort.
Methods: The Neuroendocrine Tumors–Patient Reported Outcomes (NET-PRO) study is a prospective, multi-institutional U.S. cohort funded by the Patient-Centered Outcomes Research Institute (PCORI). Adults aged ≥18 years with incident gastroenteropancreatic or lung NETs diagnosed from January 2018 through September 2024 were enrolled. Age at diagnosis was categorized (i) as a continuous variable and (ii) dichotomously using a single cut-point: EO (< 50 years) versus AO (≥ 50 years). Effect sizes were quantified with standardized mean differences (SMDs), and between-group significance was tested. Spearman correlations described how each score of HRQoL or symptoms changed with increasing age.
Results: Among 2340 participants, 617 (26.4%) were EO-NETs and 1721 (73.5%) were AO-NETs (mean age 31.5 years and 61.2 years, respectively). Patients in the EO-NETs cohort were more likely to be female (69% vs 53.5%, P < 0.001), Hispanic (6.5% vs 1.6%, P < 0.001), Non-Hispanic Blacks (4.4% vs 3.8%, P < 0.001) and have localized disease at diagnosis (40.6% vs 38.3%, P = 0.01). Younger patients also showed significantly lower mean cognitive functioning (74.4 vs 81.1; SMD = 0.29; P < 0.001), emotional functioning (68.0 vs 78.8; SMD = 0.47; P < 0.001), physical functioning (86.5 vs 82.4; SMD = 0.20; P < 0.001) and social functioning (75.2 vs 79.5; SMD = 0.15; P < 0.001) compared to their AO counterparts. Notably, patients in the EO-NETs cohort also experienced significantly higher mean financial burden (30.1 vs 15.8; SMD = 0.48; P < 0.001). Younger patients had greater symptom burden across domains, including pain, nausea/ vomiting, insomnia, appetite loss and diarrhea (P < 0.05). Spearman correlations were consistent with these findings.
Conclusions: To our knowledge, this is the first and largest analysis analyzing characteristics, symptom burden and HRQoL among EO-NETs. We found that younger patients with NETs have a unique clinicopathological profile and have notably worse symptom burden and HRQoL across various domains. Recognizing these differences underscores the importance of age-tailored supportive care and ongoing assessment in EO-NETs patient population.
Abstract ID #33490
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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