By Anna C. Greene, PhD, NETRF Chief Scientific Officer
A new multi-institutional study provides one of the most comprehensive pictures to date of what life is like for people living with neuroendocrine tumors (NETs). The research, conducted through the NET-PRO cohort and recently published in the Journal of the National Cancer Institute, analyzes the experiences of more than 2,300 patients across the United States. The study also includes contributions from NETRF CEO Elyse Gellerman, MHS, alongside a broad, multi-institutional research team.
For the Neuroendocrine Tumor Research Foundation (NETRF), the findings reflect why the patient perspective matters in research. Advancing better treatments for NETs requires not only measuring tumor response or survival, but also understanding symptom burden and the day-to-day impact of the disease.
A Landmark Study of Patient Experiences
The NET-PRO study represents one of the largest real-world assessments of patient-reported outcomes in neuroendocrine tumors. Researchers enrolled 2,367 adults with gastroenteropancreatic and lung NETs across 14 U.S. institutions, and collected detailed surveys on symptoms, health-related quality of life, and care experiences.
Historically, research on NETs has focused heavily on tumor biology and treatment outcomes. While these are critical areas of progress, the NET-PRO study helps fill an important gap by capturing what patients themselves report about living with the disease.
This patient-centered perspective is especially important in NETs, where many individuals live with the disease for years or even decades.
Persistent Symptom Burden
One of the clearest findings from the study is that many patients with NETs experience ongoing symptoms that significantly affect daily life.
Across the cohort, the most burdensome symptoms reported were:
- Fatigue
- Insomnia
- Diarrhea
These symptoms remained common across different tumor types and stages of disease.
The study also revealed meaningful differences by tumor subtype:
- Patients with lung NETs reported significantly worse shortness of breath and lower physical functioning.
- Patients with small intestinal NETs experienced higher rates of diarrhea, which often worsened over time.
- Patients with pancreatic NETs generally reported better overall functioning and lower symptom burden compared with other groups.
These findings highlight how the biological diversity of NETs translates into different patient experiences and underscores the importance of tailored symptom management strategies.
Quality of Life Matters
Overall, patients reported a global quality-of-life score lower than that of the general U.S. population, reflecting the chronic impact of the disease and its treatments.
The findings make clear that symptom burden remains a major part of the NET patient experience, even in the context of ongoing treatment and long-term disease management. The NET-PRO data also reinforces the importance of integrating patient-reported outcomes into both clinical care and research.
Beyond the Disease: Mental Health and Comorbidities
The study also highlights the broader health challenges faced by many people living with NETs.
Many participants were also managing substantial additional health burdens, with 59% reporting three or more comorbidities at diagnosis, including cardiovascular and metabolic conditions. Mental health burden was also significant, with 38% reporting depression or anxiety.
These findings support the need for multidisciplinary care approaches that address not only tumor control but also emotional well-being and long-term survivorship needs.
Care Experiences: Progress and Remaining Challenges
Encouragingly, most patients reported positive experiences with their care teams. Approximately three-quarters of participants rated their care as excellent or very good, and 81% reported being able to access NET specialists.
However, the study also identified ongoing challenges for patients navigating care:
- Concerns about treatment side effects (80%)
- Worries about treatment costs (61%)
- Disruption to family time and daily life (63%)
These findings underscore the importance of understanding the patient experience more fully, including how treatment affects life beyond the clinic.
Knowledge Gaps and Patient Education
Another important finding was that many patients reported uncertainty about key details of their disease: 36% were unsure of their tumor grade, and 53% were unsure of their Ki-67 status.
Improving communication between patients and healthcare providers, as well as expanding educational resources, may help patients better understand their disease and participate more fully in treatment decisions.
The Impact of This Research
The NET-PRO study offers important new insight into the real-world experiences of people living with neuroendocrine tumors, providing one of the largest datasets to date on symptom burden, quality of life, and care experiences.
These findings emphasize the value of considering the patient experience more fully in NET research, including in how clinical benefit is understood and evaluated in future studies. They also align closely with two central priorities in NETRF’s Research Roadmap: developing better therapies and advancing more precise treatment approaches. A better understanding of symptom burden, treatment side effects, and which patients are most affected can help inform both.
Looking Ahead
The NET-PRO study also raises important questions for future research, particularly about how patient experience can help shape the next generation of NET studies and treatment strategies.
As corresponding author Michael O’Rorke, PhD, notes:
“This project represents an important step toward integrating the patient voice into how we study and treat neuroendocrine tumors. Understanding symptom burden and quality of life alongside clinical outcomes will be critical for designing future trials and improving care in ways that truly matter to patients. A key next step is examining how quality of life evolves across different treatment sequences to help inform more personalized, patient-centered care strategies.”
A Community Effort
This research would not have been possible without the contributions of patients, advocates, and researchers across the NET community.
We are deeply grateful to the individuals who shared their experiences through the NET-PRO study. Their participation provides invaluable insight that will help inform future research and deepen our understanding of life with neuroendocrine tumors.
We also thank the study investigators, site teams, and advocacy organizations that helped make this work possible, including the NorCal CarciNET Community, the Healing NET Foundation, and the Neuroendocrine Cancer Awareness Network. NETRF was also honored to be part of this collaborative effort.
Together, partnerships across the research and patient communities can help accelerate progress toward better treatments and better outcomes for people living with neuroendocrine tumors.
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Read the full study, and for more perspective on the patient experience, listen to the NETWise podcast.