Evidence map›Paper›PMID 40200562›Full record

ArticleCancer medicine2025

"We Were Still Left in the Back Field, Not Knowing": Pediatric Cancer Patients and Parents Describe Obstacles to Prognostic Communication.

Adriana Areizaga Ayala, Harmony Farner, Shoshana Mehler, Caroline Christianson, Tara M Brinkman, Justin N Baker, Pamela S Hinds, Jennifer W Mack, Erica C Kaye

Abstract read
In one paragraph

Article in Cancer medicine, 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.

Adriana Areizaga AyalaSchool of Medicine, Universidad Central del Caribe, Bayamón, Puerto Rico.
Harmony FarnerDepartment of Oncology, St Jude Children's Research Hospital, Memphis, Tennessee, 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.
Tara M BrinkmanDepartment of Psychology and Biobehavioral Sciences, St Jude Children's Research Hospital, Memphis, Tennessee, USA.
Justin N BakerDepartment of Pediatrics, Stanford University, Palo Alto, California, USA.
Pamela S HindsDepartment of Nursing Science, Professional Practice & Quality, Children's National Hospital, Washington, DC, 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
NCI NIH HHS K08 CA266935NCI NIH HHS K08CA266935NCI NIH HHS R25CA23944
6 · The paper itself

Abstract

purposePatient/parent perceptions of poor-quality prognostic disclosure have not been well described, and these data offer important lessons to shape clinical practice and communication skills training. In this study, we aimed to characterize patient/parent negative experiences with prognostic communication to inform future efforts to improve how clinicians disclose prognosis. PATIENTS AND

methodsSemistructured interviews were conducted with a purposeful sample of pediatric cancer patients (n = 25) and parents (n = 40) across different timepoints in the progressive illness course extending into bereavement. Interviews were audio-recorded, transcribed, and de-identified for rapid qualitative analysis, in which multiple analysts used a standardized episode summary template to extract raw data specific to patient/parent narratives about prognostic disclosure experiences. Analysts engaged independently and collaboratively as a team in reflexive memo writing to identify negative experiences with prognostic communication, followed by team discussion to generate concepts and synthesize those concepts into themes.

resultsMore than half of participants (59%) described negative experiences with prognostic disclosure, with parents highlighting distressing communication experiences more often than patients (parents: 32/40, 80% vs. patients: 6/25, 24%). Across patient/parent narratives, three main themes underpinned the perception of poor-quality prognostic communication: (1) insufficient information, (2) overwhelming or contradictory information, and (3) absence of person-centered connection.

conclusionMany patients/parents perceived prognostic disclosure to be suboptimal and identified specific features underpinning poor-quality prognostic communication. These findings will inform future collaborative research with patients, parents, and multidisciplinary clinicians to codesign an intervention that individualizes prognostication to align with patient/parent preferences for receiving information and fostering connection.

Indexed as

CommunicationNeoplasmsParentsTruth DisclosureAdolescentAdultChildChild, PreschoolFemaleHumansMalePrognosisQualitative Researchadolescents and young adultscancerchildrenobstaclesparentsprognostic communication

Identifiers

PMID40200562
PMCPMC11978733

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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.