Literature DB >> 33437034

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

Niki M Medendorp1,2,3, Marij A Hillen1,2,3, Leonie N C Visser1,4, Cora M Aalfs5, Floor A M Duijkers6, Klaartje van Engelen7, Margreet G E M Ausems5, Senno Verhoef8, Anne M Stiggelbout9, Ellen M A Smets10,11,12.   

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.

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Year:  2021        PMID: 33437034      PMCID: PMC8110589          DOI: 10.1038/s41431-020-00799-1

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   5.351


  42 in total

1.  Assessing engagement while viewing video vignettes; validation of the Video Engagement Scale (VES).

Authors:  Leonie N C Visser; Marij A Hillen; Mathilde G E Verdam; Nadine Bol; Hanneke C J M de Haes; Ellen M A Smets
Journal:  Patient Educ Couns       Date:  2015-08-28

2.  The perceived personal control (PPC) questionnaire as an outcome of genetic counseling: reliability and validity of the instrument.

Authors:  Ellen M A Smets; Arwen H Pieterse; Cora M Aalfs; Margreet G E M Ausems; Alexandra M van Dulmen
Journal:  Am J Med Genet A       Date:  2006-04-15       Impact factor: 2.802

3.  A comparison of counselee and counselor satisfaction in reproductive genetic counseling.

Authors:  C M Aalfs; F J Oort; J C J M de Haes; N J Leschot; E M A Smets
Journal:  Clin Genet       Date:  2007-08       Impact factor: 4.438

4.  "Our Job is that Whole Gray Zone in Between There": Investigating Genetic Counselors' Strategies for Managing and Communicating Uncertainty.

Authors:  Lingzi Zhong; Jihun Woo; Mary A Steinhardt; Anita L Vangelisti
Journal:  Health Commun       Date:  2019-08-19

5.  An international validation study of the EORTC QLQ-INFO25 questionnaire: an instrument to assess the information given to cancer patients.

Authors:  Juan Ignacio Arraras; Eva Greimel; Orhan Sezer; Wei-Chu Chie; Mia Bergenmar; Anna Costantini; Teresa Young; Karin Kuljanic Vlasic; Galina Velikova
Journal:  Eur J Cancer       Date:  2010-07-30       Impact factor: 9.162

Review 6.  Uncertainty, responsibility, and the evolution of the physician/patient relationship.

Authors:  M S Henry
Journal:  J Med Ethics       Date:  2006-06       Impact factor: 2.903

Review 7.  Next-generation sequencing for inherited breast cancer risk: counseling through the complexity.

Authors:  Irene R Rainville; Huma Q Rana
Journal:  Curr Oncol Rep       Date:  2014-03       Impact factor: 5.075

8.  How to reduce the effect of framing on messages about health.

Authors:  Rocio Garcia-Retamero; Mirta Galesic
Journal:  J Gen Intern Med       Date:  2010-08-25       Impact factor: 5.128

Review 9.  Gene panel testing for inherited cancer risk.

Authors:  Michael J Hall; Andrea D Forman; Robert Pilarski; Georgia Wiesner; Veda N Giri
Journal:  J Natl Compr Canc Netw       Date:  2014-09       Impact factor: 11.908

10.  Does silence speak louder than words? The impact of oncologists' emotion-oriented communication on analogue patients' information recall and emotional stress.

Authors:  Leonie N C Visser; Marieke S Tollenaar; Lorenz J P van Doornen; Hanneke C J M de Haes; Ellen M A Smets
Journal:  Patient Educ Couns       Date:  2018-08-28
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  3 in total

1.  Cancer patients' understandings of genetic variants of uncertain significance in clinical care.

Authors:  Yael Amano; Aviad Raz; Stefan Timmermans; Shiri Shkedi-Rafid
Journal:  J Community Genet       Date:  2022-05-26

2.  Assessment of psychosocial difficulties by genetic clinicians and distress in women at high risk of breast cancer: a prospective study.

Authors:  Anne Brédart; Jean-Luc Kop; Anja Tüchler; Antoine De Pauw; Alejandra Cano; Julia Dick; Kerstin Rhiem; Peter Devilee; Rita Schmutzler; Dominique Stoppa-Lyonnet; Sylvie Dolbeault
Journal:  Eur J Hum Genet       Date:  2022-04-11       Impact factor: 5.351

3.  Fragmented responsibility: views of Israeli HCPs regarding patient recontact following variant reclassification.

Authors:  Alma Levin Fridman; Aviad Raz; Stefan Timmermans; Shiri Shkedi-Rafid
Journal:  J Community Genet       Date:  2021-10-05
  3 in total

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