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.
Highlights
Multigene panels involve sequencing multiple genes simultaneously to identify genetic cancer predispositions [1]
Characteristics were associated with their communication, responses and extent of shared decision making (SDM)
Most uncertainties communicated by counselors pertained to scientific topics, were initiated by the counselor and framed directly, meaning that the counselor explicitly voiced uncertainty, e.g. by saying I do not know as opposed to maybe
Summary
Multigene panels involve sequencing multiple genes simultaneously to identify genetic cancer predispositions [1]. An advantage of panel testing is the increased yield of genetic diagnosis, in families fitting multiple cancer syndromes [2]. Sequencing a large number of genes increases the level of uncertainty compared with more targeted tests [2, 3], as it increases the possibility to identify uncertain and unsolicited findings. Three categories of medical uncertainties have been identified in the current literature: (i) scientific, (ii) practical, and (iii) personal [4]. Personal uncertainty pertains to psychosocial and existential consequences for patients, e.g. whether uncertain information should be disclosed to relatives [4]
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