What Constitutes Quality of Life? Perspectives of Adolescents and Young Adults With Advanced Cancer

Authors:
Jane Hinkle Harvard T.H. Chan School of Public Health, Boston, Massachusetts

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Lori Wiener Psychosocial Support and Research Program, National Cancer Institute, Bethesda, Maryland

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Andrea Altschuler Division of Research, Kaiser Permanente Northern California, Oakland, California

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Katharine E. Brock Aflac Cancer and Blood Disorders Center at Children′s Healthcare of Atlanta, Atlanta, Georgia

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Mallory Casperson Divisions of Pediatric Oncology and Palliative Care, Cactus Cancer Society, Oakland, California

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Chun R. Chao Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, California

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Lauren Fisher Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts

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Lawrence H. Kushi Division of Research, Kaiser Permanente Northern California, Oakland, California

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Joshua R. Lakin Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts

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Anna Lefebvre Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts

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Corey M. Schwartz Division of Medical Oncology, Kaiser Permanente Northern California, Oakland, California

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Dov M. Shalman Department of Palliative Care, Kaiser Permanente Southern California, Pasadena, California

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Catherine B. Wall Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts

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Jennifer W. Mack Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts
Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts

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Volume/Issue:
Volume 21: Issue 12
Online Publication Date:
Dec 2023
DOI:
https://doi.org/10.6004/jnccn.2023.7067
Restricted access

Background: Adolescents and young adults (AYAs) with advanced cancer identify maintaining a good quality of life (QoL) as a central goal of end-of-life care. QoL is a dynamic and subjective overarching concept that refers to an individual’s relative satisfaction with their own life. Despite its importance to AYAs with advanced cancer, a patient-centered definition of QoL is lacking in this population. Patients and Methods: This qualitative secondary analysis of semistructured interviews was conducted across 3 institutions and 1 online support community among AYA patients with advanced cancer, family caregivers, and health care providers who cared for living or recently deceased AYAs. Interviewees were asked about priorities in receipt of care. Interviews were transcribed using NVivo software for primary analysis, and previously coded excerpts were screened for references to QoL. Relevant excerpts were sorted into organizing domains. Results: Participants included 23 AYA patients, 28 family caregivers, and 29 health care providers (including physicians, nurses, nurse practitioners, social workers, and psychologists). Four domains of QoL were identified: psychosocial and physical well-being, dignity, normalcy, and personal and family relationships. Within each domain there was agreement across AYAs, caregivers, and health care providers, with nuanced perspectives provided by AYAs of different ages. Personal and family relationships was the most frequently referenced domain of QoL among all participants. A common feature of each domain was that adaptation to current circumstances impacted perspectives on QoL. Patients valued active participation in the development of a care plan that supported these domains. Conclusions: AYAs with advanced cancer, their caregivers, and health care providers agree on several broad domains of QoL in this population. To provide high-quality, patient-centered care, care plans should integrate these domains to enable AYAs to maximize their QoL throughout their advanced cancer care.

Submitted May 29, 2023; final revision received July 17, 2023; accepted for publication August 2, 2023.

Author contributions: Conceptualization: Mack. Data acquisition: Fisher, Mack. Data analysis: Hinkle, Wiener, Fisher, Mack. Writing—original draft: Hinkle. Writing—review & editing: Wiener, Altschuler, Brock, Casperson, Chao, Kushi, Lakin, Lefebvre, Schwartz, Shalman, Wall, Mack.

Disclosures: The authors have disclosed that they have not received any financial considerations from any person or organization to support the preparation, analysis, results, or discussion of this article.

Funding: Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under award number 5 U01 CA218651 (J.W. Mack).

Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Correspondence: Jane Hinkle, MPH, Harvard T.H. Chan School of Public Health, 677 Huntington Avenue, Boston, MA 02215. Email: janehinkle@hsph.harvard.edu
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Print ISSN:
1540-1405
Online ISSN:
1540-1413
Publisher:
National Comprehensive Cancer Network
Cover Journal of the National Comprehensive Cancer Network
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Copyright:
Copyright © 2023 by the National Comprehensive Cancer Network 2023
Page Numbers:
8
Article Category:
Research Article
Received:
29 May 2023
Accepted:
02 Aug 2023
Print Publication Date:
01 Dec 2023
Online Publication Date:
Dec 2023
Keywords:
Quality of Life; Advanced Cancer

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