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Patient-reported experience of the impact and burden of neuroendocrine tumors: Oceania patient results from a large global survey.

Publication ,  Journal Article
Leyden, J; Pavlakis, N; Chan, D; Michael, M; Clarke, S; Khasraw, M; Price, T
Published in: Asia Pac J Clin Oncol
June 2018

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.

Duke Scholars

Published In

Asia Pac J Clin Oncol

DOI

EISSN

1743-7563

Publication Date

June 2018

Volume

14

Issue

3

Start / End Page

256 / 263

Location

Australia

Related Subject Headings

  • Young Adult
  • Surveys and Questionnaires
  • Self Report
  • Quality of Life
  • Patient Reported Outcome Measures
  • Oncology & Carcinogenesis
  • Oceania
  • Neuroendocrine Tumors
  • Middle Aged
  • Male
 

Citation

APA
Chicago
ICMJE
MLA
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Leyden, J., Pavlakis, N., Chan, D., Michael, M., Clarke, S., Khasraw, M., & Price, T. (2018). Patient-reported experience of the impact and burden of neuroendocrine tumors: Oceania patient results from a large global survey. Asia Pac J Clin Oncol, 14(3), 256–263. https://doi.org/10.1111/ajco.12785
Leyden, John, Nick Pavlakis, David Chan, Michael Michael, Stephen Clarke, Mustafa Khasraw, and Timothy Price. “Patient-reported experience of the impact and burden of neuroendocrine tumors: Oceania patient results from a large global survey.Asia Pac J Clin Oncol 14, no. 3 (June 2018): 256–63. https://doi.org/10.1111/ajco.12785.
Leyden J, Pavlakis N, Chan D, Michael M, Clarke S, Khasraw M, et al. Patient-reported experience of the impact and burden of neuroendocrine tumors: Oceania patient results from a large global survey. Asia Pac J Clin Oncol. 2018 Jun;14(3):256–63.
Leyden, John, et al. “Patient-reported experience of the impact and burden of neuroendocrine tumors: Oceania patient results from a large global survey.Asia Pac J Clin Oncol, vol. 14, no. 3, June 2018, pp. 256–63. Pubmed, doi:10.1111/ajco.12785.
Leyden J, Pavlakis N, Chan D, Michael M, Clarke S, Khasraw M, Price T. Patient-reported experience of the impact and burden of neuroendocrine tumors: Oceania patient results from a large global survey. Asia Pac J Clin Oncol. 2018 Jun;14(3):256–263.
Journal cover image

Published In

Asia Pac J Clin Oncol

DOI

EISSN

1743-7563

Publication Date

June 2018

Volume

14

Issue

3

Start / End Page

256 / 263

Location

Australia

Related Subject Headings

  • Young Adult
  • Surveys and Questionnaires
  • Self Report
  • Quality of Life
  • Patient Reported Outcome Measures
  • Oncology & Carcinogenesis
  • Oceania
  • Neuroendocrine Tumors
  • Middle Aged
  • Male