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.

中文翻译：

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“我们不确定”：讨论在最初的癌症遗传咨询中有关多基因检测的不确定性。

有关多基因面板测试的测试前咨询涉及许多不确定因素。理想情况下，以某种方式使被咨询者了解不确定性，使他们能够做出有关面板测试的明智决定。目前尚不清楚在初始癌症遗传咨询期间是否以及如何讨论不确定性。因此，我们调查了咨询员是否以及如何讨论和解决不确定性，以及共同决策的程度，并探讨了咨询员的沟通与其特征之间的联系，以进行癌症专家小组测试。为此，录像了咨询员讨论模拟病人的多基因小组的咨询。根据剧本，模拟病人代表被咨询人，患有多种癌症。咨询师之前和之后完成了一项调查。辅导员的不确定性表达方式，表达方式的开始和构图，以及他们对模拟患者脚本不确定性的口头反应均由两名研究人员独立编码。编码是根据预先开发的编码方案使用The Observer XT软件进行的，用于观察分析。此外，两名观察员评估了SDM的程度。进行了相关和回归分析，以评估沟通的不确定性，反应和SDM程度与辅导员的背景特征之间的关联。总共有29名顾问，包括临床遗传学家，遗传顾问，实习医生助理，住院医师和实习生，他们的工作经验在0至25年之间变化。辅导员表示不确定，主要是关于科学主题（94％）和他们自己（95％）的不确定性。大多数表达式直接框起来（占77％），例如我们不知道，并且在情感上保持中立（59％；没有正/负值）。辅导员主要通过明确提及不确定性（69％）来应对模拟患者的不确定性，而没有提供进一步披露的空间（66％）。经验丰富的辅导员提供了更少的空间来进一步揭示不确定性（p  <0.02），并且与其他类型的辅导员相比，临床遗传学家在SDM上得分较低（p  <0.03）。我们的发现，即辅导员主要交流科学不确定性并使用减少空间的反应，这表明在最初的癌症遗传咨询过程中，辅导员解决被咨询人的个人不确定性和关注的方式不是最佳的。