Evidence map›Paper›PMID 38081124›Full record

ArticleJournal of the National Comprehensive Cancer Network : JNCCN2023

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

Jane Hinkle, Lori Wiener, Andrea Altschuler, Katharine E Brock, Mallory Casperson, Chun R Chao, Lauren Fisher, Lawrence H Kushi, Joshua R Lakin, Anna Lefebvre and 4 more

Abstract read
In one paragraph

Article in Journal of the National Comprehensive Cancer Network : JNCCN, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Continuous sedation in adolescent and young adult cancer patients under home-based end-of-life care.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026
    Observational
  3. Article
  4. Article
  5. Article
  6. Article
  7. Characteristics of adolescent and young adult patients with cancer receiving home-based palliative care: A retrospective study at a single center.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024
    Article
  8. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors.

Jane HinkleHarvard T.H. Chan School of Public Health, Boston, Massachusetts.
Lori WienerPsychosocial Support and Research Program, National Cancer Institute, Bethesda, Maryland.
Andrea AltschulerDivision of Research, Kaiser Permanente Northern California, Oakland, California.
Katharine E BrockAflac Cancer and Blood Disorders Center at Children's Healthcare of Atlanta, Atlanta, Georgia.
Mallory CaspersonDivisions of Pediatric Oncology and Palliative Care, Cactus Cancer Society, Oakland, California.
Chun R ChaoDepartment of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, California.
Lauren FisherDivision of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts.
Lawrence H KushiDivision of Research, Kaiser Permanente Northern California, Oakland, California.
Joshua R LakinDepartment of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.
Anna LefebvreDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.
Corey M SchwartzDivision of Medical Oncology, Kaiser Permanente Northern California, Oakland, California.
Dov M ShalmanDepartment of Palliative Care, Kaiser Permanente Southern California, Pasadena, California.
Catherine B WallDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.
Jennifer W MackDivision of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts.

Funding

End-of-life care quality for adolescents and young adults with cancer: Including the patient voice in quality assessmentU01CA218651 · NCI · DANA-FARBER CANCER INST · PI JENNIFER W MACK · 2019 to 2026
$3.9M
End-of-Life Care for Adolescents and Young Adults with Cancer: An Evaluation of Care and Development of Patient-Centered Quality MeasuresR01CA218651 · NCI · DANA-FARBER CANCER INST · PI MACK, JENNIFER W · 2018 to 2018
$671k
NCI NIH HHS R01 CA218651NCI NIH HHS U01 CA218651
6 · The paper itself

Abstract

backgroundAdolescents 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

methodsThis 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.

resultsParticipants 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.

conclusionsAYAs 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.

Indexed as

NeoplasmsTerminal CareAdolescentCaregiversHealth PersonnelHumansQuality of LifeYoung AdultAdvanced CancerQuality of Life

Identifiers

PMID38081124
PMCPMC11128290

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.