John Leyden1, Nick Pavlakis2, David Chan2, Michael Michael3, Stephen Clarke2, Mustafa Khasraw2, Timothy Price4. 1. The Unicorn Foundation, Mosman, NSW, Australia. 2. Department of Medical Oncology, Royal North Shore Hospital, St Leonards, NSW, Australia. 3. Peter MacCallum Cancer Centre, Melbourne, VIC, Australia. 4. Queen Elizabeth Hospital and University of Adelaide, Adelaide, SA, Australia.
Abstract
AIM: Despite the considerable impact of neuroendocrine tumors (NETs) on patients' lives, the patient journey is not well documented. The aim of this survey was to identify the impact and burden of NETs from the patient perspective. METHODS: This was a self-reported global survey regarding NET knowledge/awareness, disease impact/management, interaction with medical teams, and desired improvements. One hundred thirty-eight patients (7% of the global study) in the Oceania region answered closed-ended questions using graded descriptors on their experience of living with NETs. RESULTS: The personal lives of patients were negatively impacted by NETs, including overall energy levels (72%, 99/138), emotional health (66%, 91/138), and finances (56%, 77/138). Eighty-one percent (22/27) of patients not currently working stated that their NET was the reason they were not employed. Of those still working, taking days off work (64%, 39/61), working reduced hours (44%, 27/61) and stopping work for a period of time (31%, 19/61) were the most frequently reported outcomes of having a NET. Although most patients felt supported by their medical team (53% [73/138] reported being extremely or very supported by healthcare professionals in general), patients also identified areas for improvement in patient care. Better access to NET-specific treatments (58%, 80/138), more awareness about NETs (58%, 80/138) and materials to help patients better explain their condition (52%, 72/138) were indicated by patients as ways to help them live better with their disease. CONCLUSION: The survey demonstrated a considerable burden of NETs on patients' lives and identified areas for improvements in long-term management.
AIM: Despite the considerable impact of neuroendocrine tumors (NETs) on patients' lives, the patient journey is not well documented. The aim of this survey was to identify the impact and burden of NETs from the patient perspective. METHODS: This was a self-reported global survey regarding NET knowledge/awareness, disease impact/management, interaction with medical teams, and desired improvements. One hundred thirty-eight patients (7% of the global study) in the Oceania region answered closed-ended questions using graded descriptors on their experience of living with NETs. RESULTS: The personal lives of patients were negatively impacted by NETs, including overall energy levels (72%, 99/138), emotional health (66%, 91/138), and finances (56%, 77/138). Eighty-one percent (22/27) of patients not currently working stated that their NET was the reason they were not employed. Of those still working, taking days off work (64%, 39/61), working reduced hours (44%, 27/61) and stopping work for a period of time (31%, 19/61) were the most frequently reported outcomes of having a NET. Although most patients felt supported by their medical team (53% [73/138] reported being extremely or very supported by healthcare professionals in general), patients also identified areas for improvement in patient care. Better access to NET-specific treatments (58%, 80/138), more awareness about NETs (58%, 80/138) and materials to help patients better explain their condition (52%, 72/138) were indicated by patients as ways to help them live better with their disease. CONCLUSION: The survey demonstrated a considerable burden of NETs on patients' lives and identified areas for improvements in long-term management.
Authors: Brooke Harrow; Francis Fagnani; Camille Nevoret; Xuan-Mai Truong-Thanh; Marie de Zélicourt; Louis de Mestier Journal: Adv Ther Date: 2022-02-22 Impact factor: 3.845