Rising Early-Onset NETs: Symptom Burden & Racial Disparities

In an interview, Udhayvir S. Grewal, MD, assistant professor at the Winship Cancer Institute at Emory University discusses the significant and concerning trend of a rising incidence of early-onset neuroendocrine tumors (NETs), challenging the traditional view of NETs as a disease primarily affecting older individuals. Insights derived from the prospective NET-PRO database reveal that this demographic shift is coupled with unique clinical and sociodemographic characteristics in younger patients.

Watch the first part of the interview with Dr Grewal here.

A critical finding is the existence of pronounced care disparities and a distinct patient profile in the early-onset population. These younger patients are disproportionately represented by racial minorities, specifically showing a higher prevalence among Hispanic and non-Hispanic Black individuals. This observation is consistent with trends seen in other early-onset gastrointestinal cancers and raises important questions about potential biological differences, environmental factors, and systemic barriers contributing to these disparities.

Crucially, the research indicates that patients with early-onset NETs face a significantly higher overall symptom burden and a poorer health-related quality of life compared to older patients. Specific symptoms that are more prevalent and impactful in this younger group include chronic issues such as diarrhea, pain, nausea and vomiting, and insomnia. Recognizing this heightened suffering is vital, as it confirms the necessity for oncologists to develop and implement tailored supportive care strategies specific to the age of disease onset.

Ultimately, the findings strongly suggest that early-onset NETs may represent a distinct disease biology from the average-onset disease. This distinction necessitates a change in clinical research: experts urge that future clinical trials must actively prioritize the enrollment of younger patients to adequately assess treatment efficacy and ensure results are generalizable. Furthermore, the systematic integration of patient-reported outcomes (PROs) is essential to comprehensively evaluate the full therapeutic impact, ensuring treatments improve not only disease outcomes but also the overall quality of life for the growing population of young NET patients.