Why carry out this study?

A survey was developed to identify the usefulness of information sources for patients (in Germany, France, and the US) with neuroendocrine tumors (NETs)—an area that is not often explored.

The survey aimed to understand the physical, informational, and emotional challenges that are faced before, at, and after the diagnosis of a NET; identify key challenges that are faced by patients; understand where patients obtain information and support; and determine whether they are able to find the information needed.

What was learned from the study?

Patients living with NETs use a variety of information sources that vary in availability and popularity between countries.

Respondents valued resources and support from other patients with NETs, such as direct contact and interaction as well as “patients-like-me” case studies.

The variety of responses indicate that a “one-size-fits-all” approach is not appropriate in NETs, reflecting the diverse nature of the condition and individual preferences, and that a tailored approach to symptom management, information, and support is needed.