Evidence map›Paper›PMID 33435936›Full record

ArticleBMC palliative care2021

Communication of Pharmacogenomic test results and treatment plans in pediatric oncology: deliberative stakeholder consultations with parents.

Cristina Longo, Vasiliki Rahimzadeh, Gillian Bartlett

Open access · goldAbstract read
In one paragraph

Article in BMC palliative care, 2021. 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
5.0field-weighted citation impact, top 5% of its field
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, 17 citations in OpenAlex.

  1. Article
  2. Article
  3. Young Women's Perspectives on Being Screened for Hereditary Breast and Ovarian Cancer Risk During Routine Primary Care.Women's health issues : official publication of the Jacobs Institute of Women's Health
    Article
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

3 authors at 3 institutions in 3 countries.

Cristina LongoDepartment of Family Medicine, McGill University, 5858 Chemin de la Côtes-des-Neiges, Suite 300, Montreal, Quebec, H3S 1Z1, Canada. c.longo@amsterdamumc.nl.ORCID http://orcid.org/0000-0001-5666-0372
Vasiliki RahimzadehDepartment of Family Medicine, McGill University, 5858 Chemin de la Côtes-des-Neiges, Suite 300, Montreal, Quebec, H3S 1Z1, Canada.
Gillian BartlettDepartment of Family Medicine, McGill University, 5858 Chemin de la Côtes-des-Neiges, Suite 300, Montreal, Quebec, H3S 1Z1, Canada.
Amsterdam UMC Location University of Amsterdam · NLMcGill University · CAStanford Medicine · US

Funding

Fonds de Recherche du Québec - Santé 30162Genome Canada 236825Génome Québec 236825
6 · The paper itself

Abstract

backgroundEffective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis.

objectiveWe solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations.

methodsEight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations - a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the 'mixed' consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT.

resultsExplaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended.

conclusionsDeliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.

Indexed as

CommunicationMedical OncologyPalliative CareParentsPharmacogenomic TestingProfessional-Family RelationsTruth DisclosureBereavementBrain NeoplasmsEmpathyHumansPediatricsStakeholder ParticipationBrain cancerCommunicationDiagnosisPediatricsPharmacogenetic testing

Identifiers

PMID33435936
PMCPMC7805194
OpenAlexW3116604898

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

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.