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Distinct Sociodemographic, Symptom, and HRQoL Profiles in Early-Onset Neuroendocrine Tumors: Insights from the NET-PRO Study
Abstract

Distinct Sociodemographic, Symptom, and HRQoL Profiles in Early-Onset Neuroendocrine Tumors: Insights from the NET-PRO Study

Udhayvir S Grewal, Tao Xu, Rhonda R DeCook, Bradley D McDowell, Brian M Gryzlak, Nicholas J Rudzianski, Kimberly C. Serrano, Abigayle M Wehrheim, Chandrikha Chandrasekharan, Joseph Dillon, …
Endocrine Abstracts, Vol.116, ea0116o1
03/04/2026
DOI: 10.1530/endoabs.116.O1

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Abstract

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.

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