A descriptive cross-sectional study of pain in patients with neuroendocrine tumors

Neuroendocrine tumors (NET) are rare cancer forms, which are often disseminated at diagnosis. In cancer patients, pain is a feared symptom and reported in 30% of patients during treatment and in 70-90% with advanced disease. However, the extent and the severity of pain in patients with NET have never been investigated.

We conducted a cross-sectional survey of 207 NET patients in the period March 2014 to March 2015 at our tertiary NET Center. We used a questionnaire to investigate the prevalence, severity and character of pain along with demographic, clinical and pathological data from medical records.

One hundred and 37 patients had undergone surgery (66%) of which 95 patients (69%) were considered cured and 112 patients had residual disease after surgery or comorbidity at diagnosis that contradicted surgery. Eighty-five patients (41%) reported any pain within the past week; the median pain intensity (numerical rating scale 0-10) was 5.0. Forty-seven (23%) of all included patients reported pain within the past week that developed in relation to NET or its treatment and 51% of these had pain descriptors consistent with neuropathic pain. The median level of plasma chromogranin A in patients with pain was significantly higher compared to patients without pain (p < .05).

A considerable proportion of our NET patients suffered from pain with moderate intensity and did not receive adequate pain treatment. Screening for pain should therefore be performed during NET follow-up visits and specific pain treatment should be considered.