Background: The aim was to investigate HRQoL and psychosocial function among patients with carcinoid tumours, longitudinally and prospectively, and to compare HRQoL among patients with carcinoid tumours to that of the Swedish general population. The aim was also to investigate the prevalence of distress during the first year after diagnosis.

Nursing managers could play a more active part in measuring quality of care, and in using results from such measurements to develop and improve quality of care.

Using a pain assessment tool such as the NRS could help patients express their pain and improve communication between nurses and patients in relation to pain as well as allow patients to participate in their own care. Carrying out prevalence pain measures similar to those used here could be helpful in performing quality improvement work in the area of pain management.

It is important that care and support for both patients and relatives be based on individual needs. The staff members responsible for providing this care and support must have knowledge and experience of the disease and its specific care. If they do not belong to an ALS (amyotrophic lateral sclerosis) team, they may require further education and support. The relatives focus on the patient's situation and do not think of their own needs. It is therefore important that health professionals be observant of the relatives and offer them help and support to better manage their situation.