Early Diagnosis

Neuroendocrine tumors (NETs) are a group of less common cancers with increasing numbers being diagnosed and more people living with this disease due to improving detection methods and raising awareness among healthcare professionals (HCPs).

Survey of Challenges in Access to Diagnostics and Treatments for NET patients (SCAN) results revealed:

 Misdiagnosis & Time to Correct Diagnosis

  • Among the NET patients who responded to SCAN only 27% (1/3) were diagnosed at once, while:
    • Misdiagnosed for years: 44% on average, in Oceania (54%), North America (47%), Europe (43%), Asia (33%)
    • Diagnosed by chance: incidental diagnosis 26%
  • Globally, it takes 5 years on average from initial symptoms to actual diagnosis: North America – 6 years; Oceania – 5 years; Europe – 4; Asia – 2 years. 
  • Four out of five misdiagnosed patients globally (81%) failed to receive a correct diagnosis within 1 year (North America (86%); Oceania (82%); Europe (80%); Asia (72%)
  • Almost half of patients (46%) were diagnosed with stage IV NETs or had metastases at time of diagnosis
  • Early detection is vital to improve patient outcomes
  • Delayed NET diagnosis remains a global challenge

Awareness of Symptoms and Availability of Diagnostic Tools

  • Incorrect diagnoses prior to NET diagnosis were most often: gastritis (36%), irritable bowel syndrome (34%), anxiety (22%), menopause (12%), stomach and bowel ulcers (12%), and asthma (10%).
  • Biopsy (59%) and CT (45% [1060/2359]) most commonly led to NET diagnosis.
  • Limited understanding of the disease and financial constraints mean current availability of diagnostic and treatment tools for NET patients vary considerably within and across healthcare systems, with many patients experiencing suboptimal care.
  • Improvements in the usage of more advanced diagnostic tools is needed. Gallium 68-DOTA PET CT, an advanced and more precise diagnostic tool, had significantly lower usage vs more common diagnostic tools globally and locally (Global: 18%).

Access to NET specialists and healthcare centers, specialized in NETs

  • Better access to NET specialists and medical centers specialized in NETs is crucial for improving access to relevant diagnostics, promoting equality in cancer care and saving lives, according to 53% of NET patients and 63% of HCPs who participated in SCAN.
  • A quarter (24%) of patients had not heard of NET specialist
  • In 41% of cases, the diagnosis is received in a hospital without a specialist in NETs. Awareness and access to NET specialists and expert centers requires improvement

Healthcare professionals involved in diagnosing NETs

  • Most commonly, NET patients had more than one healthcare specialist involved in their diagnosis.
  • NET patients commonly had more than one HCP involved in their diagnosis: 11% – one HCP, 39% – two HCPs, 23% – three HCPs, 22% – four or more HCPs.
  • The HCPs most often involved in NET diagnosis were gastroenterologists (20%) and GPs (19%)
  • A key recommendation to improve NET diagnosis: More HCPs knowledgeable in NETs (NET patients: 62%; HCPs: 50%)

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