The unmet supportive care needs, quality of life, and care experiences of patients with functioning and non-functioning Neuroendocrine tumours (NETs) at early diagnosis

Objective: Healthcare experiences, quality of life and psychosocial needs of patients with Neuroendocrine tumours (NETs) will be assessed to identify differences between NET sub-groups and inform the design of supportive care services. Methods: This study constitutes phase one of a three-phase mixed-methods multi-site study with NET patients (n = 123). Demographic, clinical and patient reported outcome questionnaire data was collected. Results: No differences in patient reported outcomes were found beyond symptoms of diarrhoea and flushing between NET sub-groups. For combined NET patients, the majority reported negative experiences in their understanding of the explanation of what was wrong with them (67%); receiving written in-formation about their cancer (69%), their family/carer receiving all the information required to care for them (61%); and the usefulness of information about NETs online (66%). NET patients reported at least one moderate-to-high need for disease specific information (63%). Medium-to large-sized differences in quality of life subscales were also observed with the functioning group reporting more anxiety compared to po-pulation norms. Conclusions: There is a need to improve the current provision of information for people with NETs. Practice implications: These findings will inform the design and development of an informational resource to facilitate improved understanding for patients with NETs. (c) 2021 Elsevier B.V. All rights reserved.