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

European Journal of Human Genetics volume 29, pages 789–799 (2021)Cite this article

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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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Fig. 1: Moderation of participants’ personality characteristics on main effects.

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Acknowledgements

We thank all genetic centers, counselors, and participants. Furthermore, we thank Eline van Bree, Tessa Brok, and Mathilde Verdam for helping with data collection, developing the videos and questionnaire items, and performing the statistical analyses, respectively.

Funding

This work was funded by the Dutch Cancer Society (KWF Kankerbestrijding), grant number 2015–7607.

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Authors and Affiliations

  1. Department of Medical Psychology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands

    Niki M. Medendorp, Marij A. Hillen, Leonie N. C. Visser & Ellen M. A. Smets

  2. Amsterdam Public Health Research Institute, Amsterdam, The Netherlands

    Niki M. Medendorp, Marij A. Hillen & Ellen M. A. Smets

  3. Cancer Center Amsterdam, Amsterdam, The Netherlands

    Niki M. Medendorp, Marij A. Hillen & Ellen M. A. Smets

  4. Department of Neurology, Amsterdam Neuroscience, Alzheimer Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands

    Leonie N. C. Visser

  5. Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands

    Cora M. Aalfs & Margreet G. E. M. Ausems

  6. Department of Clinical Genetics, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands

    Floor A. M. Duijkers

  7. Department of Clinical Genetics, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands

    Klaartje van Engelen

  8. Department of Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands

    Senno Verhoef

  9. Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands

    Anne M. Stiggelbout

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  1. Niki M. Medendorp
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Correspondence to Ellen M. A. Smets.

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Medendorp, N.M., Hillen, M.A., Visser, L.N.C. et al. A randomized experimental study to test the effects of discussing uncertainty during cancer genetic counseling: different strategies, different outcomes?. Eur J Hum Genet 29, 789–799 (2021). https://doi.org/10.1038/s41431-020-00799-1

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