Preferences Regarding End-of-Life Care Among Adolescents and Young Adults With Cancer: Results From a Comprehensive Multicenter Survey in Japan

J Pain Symptom Manage. 2019 Aug;58(2):235-243.e1. doi: 10.1016/j.jpainsymman.2019.04.033. Epub 2019 May 9.

Abstract

Context: Patient preferences influence end-of-life (EOL) care which patients receive. However, preferences regarding EOL care among adolescent and young adult (AYA) cancer population remain unclear.

Objectives: The objective of the study was to evaluate preferences regarding EOL care among AYA cancer population.

Methods: We evaluated preferences regarding EOL care as a part of a comprehensive multicenter questionnaire study investigating the experience and needs of Japanese AYA cancer population.

Results: A total of 349 AYA cancer population (213 AYA cancer patients and 136 AYA cancer survivors) were evaluated. Eighty-six percent (296/344), 53% (180/338), 88% (301/341), and 61% (207/342) of participants with valid response preferred to have prognostic disclosure, receive palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity, actively use palliative care, and stay home at EOL, respectively. In multivariate analysis, the preference regarding prognostic disclosure was associated positively with no child status (odds ratio [OR] = 3.05, P = 0.003) and negatively with history of chemotherapy (OR = 0.23, P = 0.009), the preference regarding palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity was associated positively with status under active cancer treatment (OR = 1.74, P = 0.03), and the preference of staying home at EOL was positively associated with anxiety (OR = 1.72, P = 0.04).

Conclusion: This study elucidated preferences regarding EOL care among Japanese AYA cancer population. These findings may help health care practitioners to have better understanding of preferences regarding EOL care among this population.

Keywords: Adolescent and young adult; cancer; chemotherapy; end-of-life care; preference; prognostic disclosure.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Advance Care Planning*
  • Female
  • Health Care Surveys
  • Humans
  • Japan
  • Male
  • Palliative Care*
  • Patient Preference*
  • Prognosis
  • Terminal Care*
  • Young Adult