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Grant Details

Grant Number: 5U01CA218651-05 Interpret this number
Primary Investigator: Mack, Jennifer
Organization: Dana-Farber Cancer Inst
Project Title: End-of-Life Care for Adolescents and Young Adults with Cancer: an Evaluation of Care and Development of Patient-Centered Quality Measures
Fiscal Year: 2022


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.


Patient, Caregiver, and Clinician Perspectives on Core Components of Therapeutic Alliance for Adolescents and Young Adults With Advanced Cancer: A Qualitative Study.
Authors: Mastropolo R. , Altschuler A. , Brock K.E. , Casperson M. , Chao C.R. , Fisher L. , Greenzang K.A. , Kushi L.H. , Lakin J.R. , Lefebvre A. , et al. .
Source: JAMA network open, 2023-08-01; 6(8), p. e2328153.
EPub date: 2023-08-01.
PMID: 37556137
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Quality Indicators for Adolescents and Young Adults With Advanced Cancer: A Modified Delphi Process With Patients, Family Members, and Clinicians.
Authors: Mack J.W. , Fisher L. , Khalaj A. , Altschuler A. , Chao C.R. , Kushi L.H. , Casperson M. , Lakin J.R. , Lefebvre A. , Schwartz C.M. , et al. .
Source: Journal of pain and symptom management, 2023 Jul; 66(1), p. 54-61.
EPub date: 2023-03-17.
PMID: 36933749
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The Day One Talk, 20 Years Later: What Have We Learned?
Authors: Mack J.W. .
Source: JCO oncology practice, 2023 Apr; 19(4), p. 164-166.
EPub date: 2023-02-17.
PMID: 36800565
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"The simple life experiences that every other human gets": Desire for normalcy among adolescents and young adults with advanced cancer.
Authors: Umaretiya P.J. , Fisher L. , Altschuler A. , Kushi L.H. , Chao C.R. , Vega B. , Rodrigues G. , Josephs I. , Brock K.E. , Buchanan S. , et al. .
Source: Pediatric blood & cancer, 2023 Jan; 70(1), p. e30035.
EPub date: 2022-10-29.
PMID: 36308744
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Palliative Care in the Advancing American Kidney Health Initiative: A Call for Inclusion in Kidney Care Delivery Models.
Authors: Gelfand S.L. , Mandel E.I. , Mendu M.L. , Lakin J.R. .
Source: American journal of kidney diseases : the official journal of the National Kidney Foundation, 2020 Dec; 76(6), p. 877-882.
EPub date: 2020-10-21.
PMID: 33228851
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