'We don't know for sure': discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations.

Medendorp NM1,2,3, Hillen MA4,5,6, van Maarschalkerweerd PEA4, Aalfs CM7,8, Ausems MGEM8, Verhoef S9, van der Kolk LE10, Berger LPV11, Wevers MR12, Wagner A13, Caanen BAH14, Stiggelbout AM15, Smets EMA4,5,6,7.

Author information

1: Department of Medical Psychology - Amsterdam UMC, University of Amsterdam, P.O. Box 22700, 1100 DE, Amsterdam, The Netherlands. n.m.medendorp@amsterdamumc.nl.
2: Amsterdam Public Health Research Institute, Amsterdam, The Netherlands. n.m.medendorp@amsterdamumc.nl.
3: Cancer Center Amsterdam, Amsterdam, The Netherlands. n.m.medendorp@amsterdamumc.nl.
4: Department of Medical Psychology - Amsterdam UMC, University of Amsterdam, P.O. Box 22700, 1100 DE, Amsterdam, The Netherlands.
5: Amsterdam Public Health Research Institute, Amsterdam, The Netherlands.
6: Cancer Center Amsterdam, Amsterdam, The Netherlands.
7: Department of Clinical Genetics - Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
8: Division of Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
9: Department of Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands.
10: Family Cancer Clinic, Netherlands Cancer Institute, Amsterdam, The Netherlands.
11: Department of Genetics, University Medical Center Groningen, Groningen, The Netherlands.
12: Department of Human Genetics, Radboud University Medical Center, Nijmegen, The Netherlands.
13: Department of Clinical Genetics, Erasmus University Medical Center, Rotterdam, The Netherlands.
14: Department of Clinical Genetics, Maastricht University Medical Center, Maastricht, The Netherlands.
15: Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands.

Abstract

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.