Counselees' Expressed Level of Understanding of the Risk Estimate and Surveillance Recommendation are Not Associated with Breast Cancer Surveillance Adherence.

Akke Albada,Sandra Van Dulmen,Henrietta Dijkstra,Margreet G E M Ausems,Ivette Wieffer,Arjen Witkamp

doi:10.1007/s10897-015-9869-x

Abstract

We studied counselees’ expressed understanding of the risk estimate and surveillance recommendation in the final consultation for breast cancer genetic counseling in relation with their risk perception, worry and cancer surveillance adherence 1 year post-counseling. Consecutive counselees were included from 2008 to 2010. Counselees with an indication for diagnostic DNA-testing for themselves or a breast cancer affected relative were requested to complete online questionnaires before and after counseling and one year after counseling (N = 152–124). Self-reported surveillance was compared to surveillance recommendations. Consultations were videotaped. Counselees’ reactions to the risks and recommendations were coded. Statements about the risk perception and surveillance intentions of breast cancer unaffected counselees were transcribed. Associations with outcomes were explored. Almost all breast cancer unaffected counselees (>90 %) reacted to their risk estimate with an utterance indicating understanding and this reaction was not significantly associated with their post-visit risk perception alignment. Over one-third (38.6 %) overestimated their risk post-counseling. Few counselees (5.8 %) expressed surveillance intentions. One year after counseling, about three-quarters (74.0 %) of the breast cancer unaffected counselees had adhered to the surveillance recommendation. Almost one-quarter (23.3 %) had performed more mammograms/MRI scans than recommended, which was associated with prior mammography uptake (n = 47; X2 = 5.2; p = .02). Counselees’ post-counseling overestimation of their risk, high levels of worry and high surveillance uptake were not reflected in their reactions to the counselor’s information during the final visit.Electronic supplementary materialThe online version of this article (doi:10.1007/s10897-015-9869-x) contains supplementary material, which is available to authorized users.

Highlights

Breast cancer genetic counseling aims to promote informed decision making concerning surveillance of those at increased risk of breast cancer (Resta et al 2008)
In this paper we report on a study of the counselees’ expressed understanding as a response to the risk estimate and surveillance recommendation and whether they express surveillance intentions in the final consultation for breast cancer genetic counseling
The present study comprises a secondary analysis of data obtained as part of a larger study on breast cancer genetic counseling at the department of Medical Genetics of the University Medical Centre Utrecht (UMCU) (Albada et al 2012)

Summary

Introduction

Breast cancer genetic counseling aims to promote informed decision making concerning surveillance of those at increased risk of (hereditary) breast cancer (Resta et al 2008). Genetic counseling appears to have little impact on counselees’ perception of their own and their relatives’ risk (Butow et al 2003; Meiser and Halliday 2002; Smerecnik et al 2009); 22 to 50 % of counselees continue to overestimate their risk (Butow et al 2003). Their worry about breast cancer remains substantial and might be related to a high frequency of breast self-examination (Van Dooren et al 2003)

Methods

Results

Conclusion