Abstract
Neuroendocrine Tumors (NET) are rare tumors. Massive information regarding the disease has to exchange in a few days during admission. As the disease is rare only sparse information are available in Danish. No studies regarding NET-patients and their information needs have been located and it seems as an under-researched area of cancer management. Our aim was to identify NET patients' need for: information after establishment of the diagnosis; the needs for further Web-based information and the demands for a National Patients' Association (NPA). A survey including 39 NET-patients treated at Aarhus University Hospital was conducted. The result shows that < 50% was given written information regarding NET. A total of 68% had Web access and were active users of the Internet; 95% of patients' ≤ 65 years had Web access and all Web users responded positively towards a Danish homepage. A total of 72% would welcome an NPA. The results indicate the need for additional written and Web-based information in Danish. Despite a relative high mean age among the patients a surprising large number had Web access and were current users of the Internet.