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Randomized Controlled Trial
. 2016 Dec;25(6):1179-1187.
doi: 10.1007/s10897-016-9948-7. Epub 2016 Apr 22.

Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives

Eveline de Geus  1 , Willem Eijzenga  1 , Fred H Menko  2 , Rolf H Sijmons  3 , Hanneke C J M de Haes  1 , Cora M Aalfs  4 , Ellen M A Smets  5
Affiliations
Randomized Controlled Trial

Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives

Eveline de Geus et al. J Genet Couns. 2016 Dec.

Abstract

Cancer genetic counselees receive individualized information regarding heightened risks and medical recommendations which is also relevant for their at-risk relatives. Unfortunately, counselees often insufficiently inform these relatives. We designed an intervention aimed at improving counselees' knowledge regarding which at-risk relatives to inform and what information to disclose, their motivation to disclose, and their self-efficacy. The intervention, offered by telephone by trained psychosocial workers, is based on the principles of Motivational Interviewing. Phase 1 of the intervention covers agenda setting, exploration, and evaluation, and phase 2 includes information provision, enhancing motivation and self-efficacy, and brainstorming for solutions to disseminate information within the family. Fidelity and acceptability of the intervention were assessed using recordings of intervention sessions and by counselee self-report. A total of 144 counselees participated. Psychosocial workers (n = 5) delivered the intervention largely as intended. Counselees highly appreciated the content of the intervention and the psychosocial workers who delivered the intervention. In the sessions, psychosocial workers provided additional and/or corrective information, and brainstorming for solutions was performed in 70 %. These results indicate that this intervention is feasible and warrants testing in clinical practice. For this, a randomized controlled trial is currently in progress to test the intervention's efficacy.

Keywords: Cancer genetic counseling; Family communication; Motivational interviewing.

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Conflict of interest statement

Eveline de Geus, Willem Eijzenga, Fred H. Menko, Rolf H. Sijmons, Hanneke C. J. M. de Haes, Cora M. Aalfs and Ellen M. A. Smets declares that they have no competing interests. Human Studies and Informed Consent All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients before inclusion in the study. Animal Studies No animal studies were carried out by the authors for this article.

Figures

Fig. 1
Fig. 1
a Percentage of counselee’s (n-121) endorsing 6 items to evaluate the additional counseling using a 4-point rating scale. b Percentage of counselee’s (n-121) endorsing 11 items to evaluate the psychosocial worker using a 4-point rating scale
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References

    1. (2012) Guideline Dutch association for Clinical geneticists: informing relatives in case of heriditary cancer/Richtlijn VKGN: Het informeren van familieleden bij erfelijke aanleg voor familieleden. http://www.vkgn.org/index.php/vakinformatie/richtlijnen-en-protocollen/e.... Accessed Oct 2014.
    1. Albada A, van Dulmen S, Ausems MG, Bensing JM. A Pre-Visit Website with Question Prompt Sheet for Counselees Facilitates Communication in the First Consultation for Breast Cancer Genetic Counseling:Findings from a Randomized Controlled Trial. Genetics in Medicine. 2012;14:535–542. doi: 10.1038/gim.2011.42. - DOI - PubMed
    1. Broers S, Smets EMA, Bindels P, Bennebroek Evertsz F, Calff M, de Haes CJM. Training General Practitioners in Behavior Change Counseling to Improve Asthma Medication Adherence. Patient Education and Counseling. 2005;58:279–287. doi: 10.1016/j.pec.2005.06.001. - DOI - PubMed
    1. Chivers Seymour K, Addington-Hall J, Lucassen A, Foster CL. What Facilitates or Impedes Family Communication Following Genetic Testing for Cancer Risk? A Systematic Review and Meta-Analyses of Primary Qualitative Research. Journal of Genetic Counseling. 2010;19:330–342. doi: 10.1007/s10897-010-9296-y. - DOI - PubMed
    1. Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E. Communication with Close and Distant Relatives in the Context of Genetic Testing for Hereditary Breast and Ovarian Cancer in Cancer Patients. American Journal of Medical Genetics A. 2003;116:11–19. doi: 10.1002/ajmg.a.10868. - DOI - PubMed

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