The introduction of a choice to learn pre‐symptomatic DNA test results for BRCA or Lynch syndrome either face‐to‐face or by letter

Abstract

The introduction of a choice to learn pre-symptomatic DNA test results for BRCA or Lynch syndrome either face-to-face or by letter Voorwinden, J. S.; Jaspers, J. P. C.; ter Beest, J. G.; Kievit, Y.; Sijmons, R. H.; Oosterwijk, J. C. Take-down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum. In predictive DNA testing for hereditary cancer, test results should traditionally be disclosed face-to-face. Increasingly, however, counselees ask to receive their test result at home by letter. To compare the quality of genetic counselling in the traditional way to a procedure in which counselees are offered a choice on how to get their test result. Counselees from families with a known BRCA1/2 or Lynch syndrome mutation were randomised into two groups. The control group was given the DNA test result in a face-to-face consultation. In the intervention group people could choose to learn their test result face-to-face or by letter. The quality of genetic counselling was assessed through questionnaires at three different moments. Data of 198 counselees were analysed. The quality of genetic counselling and psychological functioning were equally good in both groups. The majority of cases chose for disclosure by letter. The counselees with a good test result in the intervention group were the most satisfied. Our results indicate that in predictive DNA testing for BRCA1/2 and Lynch syndrome, a choice protocol is equally safe and more satisfying. Moreover, it is more efficient for both counsellor and counselee.

BRCAsearch: written pre-test information and BRCA1/2 germline mutation testing in unselected patients with newly diagnosed breast cancer

“…In another study from The Netherlands, counselees undergoing predictive testing of BRCA mutations or Lynch syndrome mutations all received standard pre-test genetic counseling, but were offered the choice to receive the test result either in-person or by a letter. A majority (69%) opted to receive the test result by a letter [ 20 ].…”

High Satisfaction and Low Distress in Breast Cancer Patients One Year after BRCA‐Mutation Testing without Prior Face‐to‐Face Genetic Counseling

“…Offering DNA-direct as an alternative to the standard DNA-intake, to match individual preferences for information formats prior to BRCA-mutation testing, therefore is considered acceptable in the light of our follow-up results. This adds to an ever-growing body of literature (Albada et al 2011;Butrick et al 2014;Metcalfe et al 2010;Schwartz et al 2014;Voorwinden et al 2012) showing that these new models of cancer genetic services varying in combinations of face-toface, telephone and/or digital communication, pre-and/or post BRCA-testing, are acceptable (Trepanier and Allain 2014). Positive patient experiences with newer multi-gene panels (Sie et al 2014b) have currently only been proven after pretest counseling regarding possible unsolicited or unclear findings (Rigter et al 2014).…”

Prognostic Factors for Distress After Genetic Testing for Hereditary Cancer

“…1 Flow chart of the study design formulated in the invitation letter. This rationale was based on prior research about tailoring the disclosure of DNA test results to the needs and wishes of the counselees (Voorwinden et al 2012). The data of that research has been used for this study.…”