Information needs of patients with incurable cancer

The aims of this study were to describe to what extent cancer patients with incurable cancer report to have been informed about disease-related topics and how they evaluate the quality of the information giving.

One hundred and twenty-eight patients participated in our study within 2 months after having had a diagnosis of incurable cancer. They filled out a questionnaire and were interviewed personally. We assessed the level of information, information needs and demographic factors, and we registered the type and duration of the cancer, cancer therapy, other types of received care and contacts with health care professionals. Furthermore, we assessed patients’ appreciation of the information giving by their health care professionals.

The majority of the patients said to have been informed about treatment options, side effects of their treatment, physical symptoms, where to get help, helpful devices, and diet, whereas less than half of the patients were informed about psychosocial care, euthanasia, and complementary care. Of all patients, 39% felt a need for additional information about topics such as physical symptoms, diet, euthanasia, and alternative or complementary care, whereas 19% would have appreciated extra written information. Most patients (78–88%) were satisfied with the information giving by the clinical specialist, oncology nurses, and non-specialised nurses, but only 63% evaluated the information giving by general practitioners as good.

We conclude that most patients feel sufficiently informed about important disease-specific issues and are satisfied with the information giving by health care professionals. Nevertheless, a considerable number of patients appreciate additional information.