Evidence map›Paper›PMID 33226200›Full record

ArticlePediatric blood & cancer2021

Parents' responses to prognostic disclosure at diagnosis of a child with a high-risk brain tumor: Analysis of clinician-parent interactions and implications for clinical practice.

Myra Bluebond-Langner, Nicolas Hall, Katherine Vincent, Ellen M Henderson, Jessica Russell, Emma Beecham, Gemma Bryan, Jennifer E Gains, Mark N Gaze, Olga Slater and 2 more

Abstract read
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Article in Pediatric blood & cancer, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing 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

6 citing papers in PubMed.

  1. Article
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  3. Review
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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

12 authors.

Myra Bluebond-LangnerLouis Dundas Centre for Children's Palliative Care, University College London Great Ormond Street Institute of Child Health, London, UK.ORCID 0000-0001-9281-5431
Nicolas HallLouis Dundas Centre for Children's Palliative Care, University College London Great Ormond Street Institute of Child Health, London, UK.
Katherine VincentLouis Dundas Centre for Children's Palliative Care, University College London Great Ormond Street Institute of Child Health, London, UK.
Ellen M HendersonLouis Dundas Centre for Children's Palliative Care, University College London Great Ormond Street Institute of Child Health, London, UK.ORCID 0000-0003-1714-3991
Jessica RussellLouis Dundas Centre for Children's Palliative Care, University College London Great Ormond Street Institute of Child Health, London, UK.
Emma BeechamLouis Dundas Centre for Children's Palliative Care, University College London Great Ormond Street Institute of Child Health, London, UK.ORCID 0000-0002-1832-0286
Gemma BryanLouis Dundas Centre for Children's Palliative Care, University College London Great Ormond Street Institute of Child Health, London, UK.ORCID 0000-0002-8497-4093
Jennifer E GainsDepartment of Oncology, University College London Hospitals NHS Foundation Trust, London, UK.ORCID 0000-0002-1045-9216
Mark N GazeDepartment of Oncology, University College London Hospitals NHS Foundation Trust, London, UK.ORCID 0000-0002-8344-7902
Olga SlaterDepartment of Paediatric Oncology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.ORCID 0000-0002-5374-6303
Richard W LangnerLouis Dundas Centre for Children's Palliative Care, University College London Great Ormond Street Institute of Child Health, London, UK.ORCID 0000-0001-6130-0806
Darren HargraveDepartment of Paediatric Oncology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.ORCID 0000-0001-8219-9807

Funding

Department of HealthMarie Curie MCCC-FCO-11-U
6 · The paper itself

Abstract

backgroundPrevious studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio-recorded consultations the kinds of information they seek.

methodsEthnographic study including observation and audio recording of consultations at diagnosis. Consultations were transcribed and analyzed using an interactionist perspective including tools drawn from conversation and discourse analysis.

resultsEnrolled 21 parents and 12 clinicians in 13 cases of children diagnosed with a high-risk brain tumor (HRBT) over 20 months at a tertiary pediatric oncology center. Clinicians presented prognostic information in all cases. Through their questions, parents revealed what further information they desired. Clinicians made clear that no one could be absolutely certain what the future held for an individual child. Explicit communication about prognosis did not satisfy parents' desire for information about their own child. Parents tried to personalize prognostic information and to apply it to their own situation. Parents moved beyond prognostic information presented and drew conclusions, which could change over time. Parents who were present in the same consultations could form different views of their child's prognosis.

conclusionPopulation level prognostic information left parents uncertain about their child's future. The need parents revealed was not for more such information but rather how to use the information given and how to apply it to their child in the face of such uncertainty. Further research is needed on how best to help parents deal with uncertainty and make prognostic information actionable.

Indexed as

CommunicationPhysician-Patient RelationsAdolescentBrain NeoplasmsChildChild, PreschoolFemaleHumansInfantMaleParentsPractice Patterns, Physicians'PrognosisReferral and ConsultationSurveys and QuestionnairesSurvival Ratecancercommunicationparentpediatricprognosisprospective studiesuncertainty

Identifiers

PMID33226200

What OpenQuestion holds

Textmetadata
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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.