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.
Abstract
AbstractPre-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.
Publisher
Springer Science and Business Media LLC
Subject
Cancer Research,Genetics(clinical),Oncology,Genetics
Reference38 articles.
1. Xue Y, Ankala A, Wilcox WR, Hegde MR (2015) Solving the molecular diagnostic testing conundrum for Mendelian disorders in the era of next-generation sequencing: single-gene, gene panel, or exome/genome sequencing. Genet Sci 17(6):444
2. Hall MJ, Forman AD, Pilarski R, Wiesner G, Giri VN (2014) Gene panel testing for inherited cancer risk. J Natl Compr Cancer Netw 12(9):1339–1346
3. Howard HC, Iwarsson E (2017) Mapping uncertainty in genomics. J Risk Res 21:117–128
4. Han PK, Klein WM, Arora NK (2011) Varieties of uncertainty in health care: a conceptual taxonomy. Med Decis Mak 31(6):828–838
5. Han PK, Umstead KL, Bernhardt BA, Green RC, Joffe S, Koenig B, Krantz I, Waterston LB, Biesecker LG, Biesecker BB (2017) A taxonomy of medical uncertainties in clinical genome sequencing. Genet Med 19:918
Cited by
10 articles.
订阅此论文施引文献
订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献