Evidence map›Paper›PMID 39994833›Full record

ArticlePediatric blood & cancer2025

Treatment and Decision-Making Preferences of Adolescents and Young Adults With Advanced Cancer and Their Parents or Trusted Persons: An Adaptive Conjoint Analysis Study.

Jennifer M Snaman, Deborah Feifer, Gabrielle Helton, Benjamin Herold, Li Chen, Emanuele Mazzola, Abby R Rosenberg, Justin N Baker, Joanne Wolfe

Abstract read
In one paragraph

Article in Pediatric blood & cancer, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–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

1 citing paper in PubMed.

  1. 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

9 authors.

Jennifer M SnamanDepartment of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.ORCID https://orcid.org/0000-0002-2306-8994
Deborah FeiferEmory University School of Medicine, Atlanta, Georgia, USA.
Gabrielle HeltonDoctor of Medicine Program, University of Colorado School of Medicine, Aurora, Colorado, USA.
Benjamin HeroldDepartment of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Li ChenDepartment of Data Science, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Emanuele MazzolaDepartment of Data Science, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Abby R RosenbergDepartment of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Justin N BakerDivision of Quality of Life and Pediatric Palliative Care, Stanford School of Medicine and Stanford Medicine Children's Health, Palo Alto, California, USA.
Joanne WolfeHarvard Medical School, Boston, Massachusetts, USA.

Funding

Boston Children's Hospital Office of Faculty Development Career Development Faculty Fellowship AwardNational Palliative Care Research CenterNCI NIH HHS L40 CA208124
6 · The paper itself

Abstract

purposeTreatment decision-making in adolescents and young adults (AYAs) requires preference consideration and tradeoffs. Using MyPref, an adaptive conjoint analysis tool, we examined and compared the decision-making and treatment preferences of both AYAs and their parent or other trusted person (PTP). PATIENTS AND

methodsAYAs aged 15-30 with advanced cancer independently completed MyPref, including demographic questions, the Control Preference Scale, and the adaptive conjoint analysis survey. AYAs could invite a PTP to participate. Participants received a personalized MyPref Summary Report quantifying their preference for nine treatment attributes. Preference scores were summarized and compared by participant group, AYA age, sex, cancer diagnosis, and distance from the hospital.

resultsWe enrolled 50 AYAs, 15 of whom selected a PTP to participate. Most AYAs identified as male (64%), White, non-Hispanic (84%), and had solid tumors (48%). The majority (80%) of PTPs identified as the AYA's mother. AYAs favored participant-led decision-making, while PTPs preferred a shared approach. Treatment attributes with the highest preference scores included time until cancer grows, quality of life, and side effects. Compared to PTPs, AYAs had lower preference scores for quality of life. Older AYAs (

conclusionAYAs with advanced cancer exhibit diverse preferences for decision-making roles and treatment factors. Despite differences, participants valued longer time until cancer progression and quality of life. Future research should explore how preferences of AYAs and their PTPs change over time and optimal strategies for initiating preference discussions earlier in the illness course.

Indexed as

Decision MakingNeoplasmsParentsPatient PreferenceAdolescentAdultFemaleFollow-Up StudiesHumansMalePrognosisSurveys and QuestionnairesYoung Adultadolescentdecision‐makingneoplasms/therapypatient preferenceyoung adult

Identifiers

PMID39994833
PMCPMC11934043

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Registered trials

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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.