Evidence map›Paper›PMID 40760718›Full record

ArticlePediatric blood & cancer2025

Differences in Patient and Parent Preferences for Prognostic Communication Across Disease Milestones in Advanced Childhood Cancer.

Rachel A Kentor, Shoshana Mehler, Caroline Christianson, Harmony Farner, Tara M Brinkman, Justin N Baker, Pamela S Hinds, Jennifer W Mack, Erica C Kaye

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 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Article
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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.

Rachel A KentorDivisions of Palliative Care and Psychology, Department of Pediatrics, Baylor College of Medicine/Texas Children's Hospital, Houston, Texas, USA.
Shoshana MehlerDepartment of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Caroline ChristiansonDivision of Pediatric Hematology/Oncology, NYU Langone Health, New York City, New York, USA.
Harmony FarnerDepartment of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Tara M BrinkmanDepartment of Psychology and Biobehavioral Sciences, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.ORCID https://orcid.org/0000-0002-4250-6160
Justin N BakerDivision of Quality of Life and Pediatric Palliative Care, Department of Pediatrics, Stanford University and Stanford Medicine Children's Health, Palo Alto, California, USA.
Pamela S HindsDepartment of Nursing Science, Professional Practice & Quality, Children's National Hospital, Washington, District of Columbia, USA.ORCID https://orcid.org/0000-0001-6491-6649
Jennifer W MackDepartment of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.ORCID https://orcid.org/0000-0001-5791-4178
Erica C KayeDepartment of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.ORCID https://orcid.org/0000-0002-6522-3876

Funding

IMPROVING PROGNOSTIC COMMUNICATION IN PEDIATRIC CANCERK08CA266935 · NCI · ST. JUDE CHILDREN'S RESEARCH HOSPITAL · PI Erica Carmen Kaye · 2022 to 2026
$1.0M
American Lebanese Syrian Associated CharitiesNCI NIH HHSNCI NIH HHS K08 CA266935
6 · The paper itself

Abstract

backgroundNavigating prognostic communication is challenging for clinicians caring for adolescents and young adults (AYAs) with poor-prognosis cancer. Presently, little is known about how AYA and parent preferences for prognostic disclosure evolve over time. This study explored communication preferences at key illness milestones of disease progression to inform individualized, person-centered approaches to optimize prognostic disclosure. PROCEDURE: Sixty-five participants, including 25 AYAs aged 12-25 years and 40 parents, were recruited at distinct illness timepoints-diagnosis, relapse/progression, Phase I/II trial enrollment, and bereavement-to participate in semi-structured interviews about their preferences for timing, style, and content of prognostic communication. Rapid analysis was conducted to generate and compare themes across timepoints.

resultsPreferences for early, ongoing, and repeated prognostic discussions were increasingly reported by AYAs and parents at advancing illness milestones, with bereaved parents particularly emphasizing the value of early disclosure in retrospect. Parents of living AYAs, though not bereaved parents, advised oncologists to consider excluding AYAs from prognostic conversations-a view rarely shared by AYAs themselves. AYAs and parents preferred oncologist-led communication and also advocated for the inclusion of multidisciplinary clinicians.

conclusionsThese findings highlight the dynamic nature of prognostic communication preferences across the illness trajectory and key variances between AYA and parents' preferences. Early and serial prognostic conversations are welcomed by many AYAs and parents, and multidisciplinary support may enhance communication satisfaction, particularly as preferences shift over time. Future research will investigate longitudinal interventions that recognize evolving communication preferences to personalize prognostic disclosure across pediatric cancer care.

Indexed as

CommunicationNeoplasmsParentsPatient PreferenceTruth DisclosureAdolescentAdultChildDisease ProgressionFemaleFollow-Up StudiesHumansMalePrognosisYoung Adultadolescent and young adultcancercommunicationparentpediatricprognosis

Identifiers

PMID40760718
PMCPMC12422796

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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.