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‘We don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations
Pre-test counseling about multigene panel testing involves many uncertainties. Ideally, counselees are informed about uncertainties in a way that enables them to make an informed decision about panel testing. It is presently unknown whether and how uncertainty is discussed during initial cancer gene...
Autores principales: | , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer Netherlands
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7026220/ https://www.ncbi.nlm.nih.gov/pubmed/31773425 http://dx.doi.org/10.1007/s10689-019-00154-4 |
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author | Medendorp, Niki M. Hillen, Marij A. van Maarschalkerweerd, Pomme E. A. Aalfs, Cora M. Ausems, Margreet G. E. M. Verhoef, Senno van der Kolk, Lizet E. Berger, Lieke P. V. Wevers, Marijke R. Wagner, Anja Caanen, Barbara A. H. Stiggelbout, Anne M. Smets, Ellen M. A. |
author_facet | Medendorp, Niki M. Hillen, Marij A. van Maarschalkerweerd, Pomme E. A. Aalfs, Cora M. Ausems, Margreet G. E. M. Verhoef, Senno van der Kolk, Lizet E. Berger, Lieke P. V. Wevers, Marijke R. Wagner, Anja Caanen, Barbara A. H. Stiggelbout, Anne M. Smets, Ellen M. A. |
author_sort | Medendorp, Niki M. |
collection | PubMed |
description | Pre-test counseling about multigene panel testing involves many uncertainties. Ideally, counselees are informed about uncertainties in a way that enables them to make an informed decision about panel testing. It is presently unknown whether and how uncertainty is discussed during initial cancer genetic counseling. We therefore investigated whether and how counselors discuss and address uncertainty, and the extent of shared decision-making (SDM), and explored associations between counselors’ communication and their characteristics in consultations on panel testing for cancer. For this purpose, consultations of counselors discussing a multigene panel with a simulated patient were videotaped. Simulated patients represented a counselee who had had multiple cancer types, according to a script. Before and afterwards, counselors completed a survey. Counselors’ uncertainty expressions, initiating and the framing of expressions, and their verbal responses to scripted uncertainties of the simulated patient were coded by two researchers independently. Coding was done according to a pre-developed coding scheme using The Observer XT software for observational analysis. Additionally, the degree of SDM was assessed by two observers. Correlation and regression analyses were performed to assess associations of communicated uncertainties, responses and the extent of SDM, with counselors’ background characteristics. In total, twenty-nine counselors, including clinical geneticists, genetic counselors, physician assistants-in-training, residents and interns, participated of whom working experience varied between 0 and 25 years. Counselors expressed uncertainties mainly regarding scientific topics (94%) and on their own initiative (95%). Most expressions were framed directly (77%), e.g. We don’t know, and were emotionally neutral (59%; without a positive/negative value). Counselors mainly responded to uncertainties of the simulated patient by explicitly referring to the uncertainty (69%), without providing space for further disclosure (66%). More experienced counselors provided less space to further disclose uncertainty (p < 0.02), and clinical geneticists scored lower on SDM compared with other types of counselors (p < 0.03). Our findings that counselors mainly communicate scientific uncertainties and use space-reducing responses imply that the way counselors address counselees’ personal uncertainties and concerns during initial cancer genetic counseling is suboptimal. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s10689-019-00154-4) contains supplementary material, which is available to authorized users. |
format | Online Article Text |
id | pubmed-7026220 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Springer Netherlands |
record_format | MEDLINE/PubMed |
spelling | pubmed-70262202020-03-02 ‘We don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations Medendorp, Niki M. Hillen, Marij A. van Maarschalkerweerd, Pomme E. A. Aalfs, Cora M. Ausems, Margreet G. E. M. Verhoef, Senno van der Kolk, Lizet E. Berger, Lieke P. V. Wevers, Marijke R. Wagner, Anja Caanen, Barbara A. H. Stiggelbout, Anne M. Smets, Ellen M. A. Fam Cancer Original Article Pre-test counseling about multigene panel testing involves many uncertainties. Ideally, counselees are informed about uncertainties in a way that enables them to make an informed decision about panel testing. It is presently unknown whether and how uncertainty is discussed during initial cancer genetic counseling. We therefore investigated whether and how counselors discuss and address uncertainty, and the extent of shared decision-making (SDM), and explored associations between counselors’ communication and their characteristics in consultations on panel testing for cancer. For this purpose, consultations of counselors discussing a multigene panel with a simulated patient were videotaped. Simulated patients represented a counselee who had had multiple cancer types, according to a script. Before and afterwards, counselors completed a survey. Counselors’ uncertainty expressions, initiating and the framing of expressions, and their verbal responses to scripted uncertainties of the simulated patient were coded by two researchers independently. Coding was done according to a pre-developed coding scheme using The Observer XT software for observational analysis. Additionally, the degree of SDM was assessed by two observers. Correlation and regression analyses were performed to assess associations of communicated uncertainties, responses and the extent of SDM, with counselors’ background characteristics. In total, twenty-nine counselors, including clinical geneticists, genetic counselors, physician assistants-in-training, residents and interns, participated of whom working experience varied between 0 and 25 years. Counselors expressed uncertainties mainly regarding scientific topics (94%) and on their own initiative (95%). Most expressions were framed directly (77%), e.g. We don’t know, and were emotionally neutral (59%; without a positive/negative value). Counselors mainly responded to uncertainties of the simulated patient by explicitly referring to the uncertainty (69%), without providing space for further disclosure (66%). More experienced counselors provided less space to further disclose uncertainty (p < 0.02), and clinical geneticists scored lower on SDM compared with other types of counselors (p < 0.03). Our findings that counselors mainly communicate scientific uncertainties and use space-reducing responses imply that the way counselors address counselees’ personal uncertainties and concerns during initial cancer genetic counseling is suboptimal. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s10689-019-00154-4) contains supplementary material, which is available to authorized users. Springer Netherlands 2019-11-26 2020 /pmc/articles/PMC7026220/ /pubmed/31773425 http://dx.doi.org/10.1007/s10689-019-00154-4 Text en © The Author(s) 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. |
spellingShingle | Original Article Medendorp, Niki M. Hillen, Marij A. van Maarschalkerweerd, Pomme E. A. Aalfs, Cora M. Ausems, Margreet G. E. M. Verhoef, Senno van der Kolk, Lizet E. Berger, Lieke P. V. Wevers, Marijke R. Wagner, Anja Caanen, Barbara A. H. Stiggelbout, Anne M. Smets, Ellen M. A. ‘We don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations |
title | ‘We don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations |
title_full | ‘We don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations |
title_fullStr | ‘We don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations |
title_full_unstemmed | ‘We don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations |
title_short | ‘We don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations |
title_sort | ‘we don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations |
topic | Original Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7026220/ https://www.ncbi.nlm.nih.gov/pubmed/31773425 http://dx.doi.org/10.1007/s10689-019-00154-4 |
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