Survey Details Access, Diagnostic Challenges Faced by Patients With Neuroendocrine Tumors


Misdiagnosis was common in these patients, and mean time to diagnosis was around 5 years.

New survey results highlight challenges patients with neuroendocrine tumors (NETs) face when it comes to access to diagnostics and treatment, according to the study published in Journal of Neuroendocrinology.

Findings underscore that “national care pathways, enhancing health care professional (HCP) NET knowledge, and ensuring effective diagnostics and access to appropriate treatments are crucial to improving patient survival and NET care worldwide,” the researchers said.

NETs are rare neoplasms stemming from neuroendocrine cells that can develop in the gastrointestinal tract, pancreas, and lungs. Because they can present in different areas of the body, lead to diverse symptoms, and are rare, timely diagnosis and management are challenging.

NETs have an incidence of approximately 6.98 per 100,000 people in the United States, although rates are increasing rapidly, potentially due to improved awareness of the condition and diagnostic tools, the authors said.

In 2019, the International Neuroendocrine Cancer Alliance launched the Survey of Challenges in Access to Diagnostics and Treatment for Neuroendocrine Tumor Patients (SCAN), in part to provide details on time to diagnosis, awareness and information spread, access to optimal NET health care, and the adequacy of health care systems to meet the needs of patients with NETs.

The online survey was carried out between September and November 2019. A total of 2359 patients with NET and 436 HCPs completed the survey, which included 54 patient questions and 33 HCP questions.

Results showed that misdiagnosis was common, at 44%, and mean (SD) time to diagnosis was 4.8 (6.2) years.

Additional findings included the following:

  • Compared with global figures (60%), the availability of Ga-DOTA positron emission tomography (PET)/CT was significantly lower in Asia (45%) and higher in Oceania (86%)
  • HCPs reported that Ga-DOTA PET/CT was free/affordable to fewer patients in emerging and developing economies (EDEs; 17%) than advanced economies (AEs; 59%)
  • Compared with global data (52%), patient-reported availability of peptide receptor radionuclide therapy was significantly lower in Asia (31%) and higher in Oceania (61%)
  • Significant differences were observed in average annual NET specialist costs between AEs and EDEs, at $1081 and $2915, respectively
  • Compared with AEs, patients in EDE travelled longer mean distances for NET specialists (1032 [SD, 1578] vs 181 [SD, 496] km)
  • Patients and HCPs both recommended referral to HCPs who were more knowledgeable in the field of NETs and had better access to NET experts/specialist centers

“Delayed diagnosis remains a major issue,” the authors wrote. Although these results showed improved access to specialized diagnostics, “time from first symptoms to correct diagnosis was still poor,” they added. They found this unmet need has not improved over time, when they compared results with findings of previous surveys from 2014 and 2018.

In addition, “despite some improvements, SCAN highlighted that global availability and affordability of specialized tools remains poor and a critical area to advance,” the researchers said.

They urged caution when it comes to interpreting survey results from Africa and South America due to small sample sizes. Incidental diagnoses were also not included in the data, marking a limitation to the study, and voluntary sampling may have introduced bias.

Overall, “tackling accessibility and affordability issues, especially in EDEs, is key to minimizing care access disparities between [socioeconomic status] groups,” the authors wrote.

“Raising awareness among [general practitioners] and other HCPs that NETs tend to present late with nonspecific symptoms that may be attributed to an alternative diagnosis is also imperative to further improve NET care. SCAN contributes to positioning NET research on an equal footing with other cancers of similar prevalence and the results are crucial to improving patient survival and NET care worldwide,” they concluded.


Dureja S, McDonnell M, Van Genechten D, et al. Global challenges in Access to diagnostics and treatment for neuroendocrine tumor (NET) patients. J Neuroendocrinol. Published online May 30, 2023. doi:10.1111/jne.13310

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