Aggressiveness of End-of-Life Care among Adolescents and Young Adults with Cancer

Although cancer is the leading disease-related cause of death among young adults, little is known about
the care that adolescent and young adult (AYA) patients with cancer receive at the end of life (EOL).
Previous work suggests that younger adults may be at risk for receiving high rates of aggressive EOL care,
with prevalent chemotherapy use and hospitalization in the last month of life, and late use of hospice care.
These factors are in turn associated with poorer quality of life near the EOL and a higher symptom burden.
However, prior work has typically focused on the over-65 population in Medicare, with younger adults
defined as those closer to 65. Thus much remains unknown about the care that AYA patients receive at the
EOL, yet without such data, we cannot develop systems to ensure high quality EOL care for these young
This pilot study will garner feasibility data that will form the basis for a larger study on the intensity of EOL
care among AYA cancer patients in the Cancer Research Network. The pilot project will evaluate the
capacity of medical record systems within the Kaiser Permanente Southern California (KPSC) health plan to
capture data on EOL care among AYA patients with cancer. This pilot study will first focus on refining
methods to identify a cohort of AYA decedents who died anticipated deaths, such that EOL care planning
was appropriate. In addition to evaluating EOL care based on established measures of the intensity of care,
we will evaluate the feasibility of measuring novel, patient-centered EOL care indicators that may be
particularly relevant for AYA patients using in-depth medical record review. Finally, preliminary assessment
of the prevalence of intensive care at the EOL in AYA cancer patients will be generated to provide strong
justification for the larger R01 study, insights for directions of the R01 study, and the basis for any needed
power calculations.
This project fits the interests of the CRN Epidemiology of Progress & Outcomes Scientific Working Group.

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