Wednesday, March 12, 2025 3/12/2025

End-of-Life Care for Adolescents and Young Adults with Cancer: An Evaluation of Care and Development of Patient-Centered Quality Measures

Award Number: U01CA218651
ORGANIZATION: NATIONAL CANCER INSTITUTE
OPDIV: NIH
AWARD CLASS: COOPERATIVE AGREEMENT
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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PROJECT SUMMARY/ABSTRACT 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.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2025 ( Subtotal = $725,836 )
2025	2025	DANA-FARBER CANCER INSTITUTE, INC.	450 BROOKLINE AVE	BOSTON	MA	02215	SUFFOLK	USA	Cancer Cause and Prevention Research	000	6	1/14/2025	COMPETING CONTINUATION	$725,836
														Subtotal = $725,836

Issue Date FY: 2024 ( Subtotal = -$6,893 )
2024	2022	DANA-FARBER CANCER INSTITUTE, INC.	450 BROOKLINE AVE	BOSTON	MA	02215	SUFFOLK	USA	Cancer Cause and Prevention Research	000	5	5/29/2024	NON-COMPETING CONTINUATION	-$6,893
														Subtotal = -$6,893

Issue Date FY: 2022 ( Subtotal = $607,778 )
2022	2022	DANA-FARBER CANCER INSTITUTE, INC.	450 BROOKLINE AVE	BOSTON	MA	02115	SUFFOLK	USA	Cancer Cause and Prevention Research	001	5	5/25/2022	NON-COMPETING CONTINUATION	$49,620
2022	2022	DANA-FARBER CANCER INSTITUTE, INC.	450 BROOKLINE AVE	BOSTON	MA	02115	SUFFOLK	USA	Cancer Cause and Prevention Research	002	5	9/21/2022	NON-COMPETING CONTINUATION	$0
2022	2022	DANA-FARBER CANCER INSTITUTE, INC.	450 BROOKLINE AVE	BOSTON	MA	02115	SUFFOLK	USA	Cancer Cause and Prevention Research	000	5	2/7/2022	NON-COMPETING CONTINUATION	$558,158
														Subtotal = $607,778

Issue Date FY: 2021 ( Subtotal = $626,949 )
2021	2021	DANA-FARBER CANCER INSTITUTE, INC.	450 BROOKLINE AVE	BOSTON	MA	02115	SUFFOLK	USA	Cancer Cause and Prevention Research	001	4	1/29/2021	NON-COMPETING CONTINUATION	$626,949
2021	2021	DANA-FARBER CANCER INSTITUTE, INC.	450 BROOKLINE AVE	BOSTON	MA	02115	SUFFOLK	USA	Cancer Cause and Prevention Research	002	4	7/23/2021	NON-COMPETING CONTINUATION	$0
2021	2020	DANA-FARBER CANCER INSTITUTE, INC.	450 BROOKLINE AVE	BOSTON	MA	02115	SUFFOLK	USA	Cancer Cause and Prevention Research	000	3	1/27/2021	NON-COMPETING CONTINUATION	$0
														Subtotal = $626,949

Issue Date FY: 2020 ( Subtotal = $636,251 )
2020	2020	DANA-FARBER CANCER INSTITUTE, INC.	450 BROOKLINE AVE	BOSTON	MA	02115	SUFFOLK	USA	Cancer Cause and Prevention Research	000	3	1/17/2020	NON-COMPETING CONTINUATION	$636,251
														Subtotal = $636,251

Issue Date FY: 2019 ( Subtotal = $648,745 )
2019	2019	DANA-FARBER CANCER INSTITUTE, INC.	450 BROOKLINE AVE	BOSTON	MA	02115	SUFFOLK	USA	Cancer Cause and Prevention Research	000	2	5/24/2019	NON-COMPETING CONTINUATION	$648,745
														Subtotal = $648,745

Grand Total All Awards = $3,238,666

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End-of-Life Care for Adolescents and Young Adults with Cancer: An Evaluation of Care and Development of Patient-Centered Quality Measures

Award Number: U01CA218651

ORGANIZATION: NATIONAL CANCER INSTITUTE

OPDIV: NIH

AWARD CLASS: COOPERATIVE AGREEMENT

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

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