The unmet supportive care needs, quality of life, and care experiences of patients with functioning and non-functioning Neuroendocrine tumours (NETs) at early diagnosis.
Lisa Guccione, Karla Gough, Allison Drosdowsky, Timothy Price, Nick Pavlakis, David Wyld, David Ransom, Michael Michael, Penelope Schofield
Patient Educ Couns | Elsevier BV | Published : 2021
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 ..View full abstract