Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer

Academic Article


  • Background: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. Objective: To describe caregivers of AYA cancer decedents perspectives’ on EOL care quality related to EOL care communication. Design: Cross-sectional observational study. Setting/Subjects: Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. Measurements: Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. Results: Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. Conclusions: Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.
  • Published In

    Digital Object Identifier (doi)

    Author List

  • Currie ER; Johnston EE; Bakitas M; Roeland E; Lindley LC; Gilbertson-White S; Mack J
  • Start Page

  • 87
  • End Page

  • 92
  • Volume

  • 37
  • Issue

  • 2