Evidence map›Paper›PMID 33437034›Full record

Trial reportEuropean journal of human genetics : EJHG2021

A randomized experimental study to test the effects of discussing uncertainty during cancer genetic counseling: different strategies, different outcomes?

Niki M Medendorp, Marij A Hillen, Leonie N C Visser, Cora M Aalfs, Floor A M Duijkers, Klaartje van Engelen, Margreet G E M Ausems, Senno Verhoef, Anne M Stiggelbout, Ellen M A Smets

Open access · bronzeAbstract readRandomized Controlled Trial
In one paragraph

Trial report in European journal of human genetics : EJHG, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed
1.9field-weighted citation impact, top 14% 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

10 citing papers in PubMed, 11 citations in OpenAlex.

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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

10 authors at 5 institutions in 1 country.

Niki M MedendorpDepartment of Medical Psychology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0002-0465-9238
Marij A HillenDepartment of Medical Psychology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Leonie N C VisserDepartment of Medical Psychology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0003-3487-7938
Cora M AalfsDivision Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
Floor A M DuijkersDepartment of Clinical Genetics, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Klaartje van EngelenDepartment of Clinical Genetics, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
Margreet G E M AusemsDivision Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
Senno VerhoefDepartment of Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands.
Anne M StiggelboutMedical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands.
Ellen M A SmetsDepartment of Medical Psychology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands. e.m.smets@amsterdamumc.nl.
Amsterdam University Medical Centers · NLLeiden University Medical Center · NLUtrecht University · NLAmsterdam Neuroscience · NLDutch Cancer Society · NL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Uncertainty is increasingly discussed during genetic counseling due to innovative techniques, e.g., multigene panel testing. Discussions about uncertainty may impact counselees variably, depending on counselors' communication styles. Ideally, the discussion of uncertainty enables counselees to cope with uncertainty and make well-informed decisions about testing. We examined the impact of how counselors convey uncertainty and address counselees' uncertainty, and explored the role of individual characteristics. Therefore, a randomized controlled experiment using videos was conducted. Former counselees (N = 224) viewed one video depicting a genetic consultation about multigene panel testing. The extent of counselors' communication of uncertainty (comprehensive vs. the essence) and their response to counselees' uncertainty expressions (providing information vs. providing space for emotions vs. normalizing and counterbalancing uncertainty) were systematically manipulated. Individual characteristics, e.g., uncertainty tolerance, were assessed, as well as outcome variables (primary outcomes: feelings of uncertainty and information recall). No effects were found on primary outcomes. Participants were most satisfied when the essence was communicated, combined with providing information or providing space responses (p = 0.002). Comprehensive information resulted in less perceived steering toward testing (p = 0.005). Participants with lower uncertainty tolerance or higher trait anxiety were less confident about their understanding when receiving comprehensive information (p = 0.025). Participants seeking information experienced less uncertainty (p = 0.003), and trusted their counselor more (p = 0.028), when the counselor used information providing responses. In sum, the impact of discussing uncertainty primarily depends on individual characteristics. Practical guidelines should address how to tailor the discussion of uncertainty.

Indexed as

UncertaintyAdultAgedAged, 80 and overFemaleGenetic CounselingHumansMaleMiddle AgedNeoplasmsPatient SatisfactionTruth Disclosure

Identifiers

PMID33437034
PMCPMC8110589
OpenAlexW3120627373

What OpenQuestion holds

Textmetadata
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.