This proposal responds to PA-15-324, End-of-Life (EOL) and Palliative Needs of Adolescents and
Young Adults (AYAs) with Serious Illnesses, a research priority for the National Institutes of Health.
AYAs with cancer account for 70,000 new cancer diagnoses in the United States per year, and cancer is their
leading disease-related cause of death. However, the quality of EOL care these patients receive has not been
systematically defined or measured. In addition, existing measures of EOL care quality were designed for older
adults and inadequately capture AYA patient values; a set of measures to characterize high quality EOL care
for AYAs does not exist. The overarching goal of this application is to answer the questions: What is the
quality of EOL care for AYAs with cancer? What is a patient-centered definition of high quality EOL
care for AYAs facing terminal illness? This application will leverage unique data available through Dana-
Farber Cancer Institute and the Cancer Research Network to examine care among 2500 AYA cancer patients
who died from 2003-2017 between the ages of 12 and 39, and expand on existing measures by developing a
novel set of EOL care quality indicators that reflect the needs of AYAs. The proposed study will:
Aim 1: Examine EOL care experiences among AYA patients with cancer. We will (a) establish a cohort of
2500 AYA cancer patients who died between 2003 and 2017 after receiving care at one of our three sites; (b)
use electronic health records and in-depth medical record review to evaluate EOL care quality; and (c)
evaluate sources of variation in EOL care, including differences between patients aged 12-24 years and those
aged 25-39 years at death.
Aim 2: Develop a novel set of EOL care quality indicators that reflects the needs of the AYA population.
The investigators will (a) conduct in-depth interviews with AYA patients and family members, oncology and
hospice nurses, and physicians in oncology and hospice/palliative medicine, to develop a set of candidate
quality attributes applicable to AYA patients; (b) use a modified Delphi process among stakeholders to hone in
on relevant and priority domains for AYA patients aged 12-24 and 25-39 years; and (c) use results to specify a
novel set of AYA EOL care quality indicators using administrative, medical record, and interview data.
Aim 3: Evaluate the quality of EOL care using newly developed indicators among recent AYA
decedents. Investigators will (a) survey surviving family caregivers and perform additional focused medical
record review for 300 recent AYA decedents from the parent cohort to evaluate EOL care quality according to
newly developed quality indicators; and (b) compare findings from novel versus established indicators.
This study will allow an understanding of the current state of EOL care quality among AYA patients and
develop a set of quality indicators that capture AYA patient values for care. This work will enable valid
assessment of care quality and rigorous evaluation of interventions to improve AYA EOL care delivery.
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