Bredart, Anne, De Pauw, Antoine, Anota, Amelie ORCID: 0000-0001-6896-1367, Tuchler, Anja ORCID: 0000-0001-9985-8397, Dick, Julia, Muller, Anita, Kop, Jean-Luc ORCID: 0000-0002-6963-8411, Rhiem, Kerstin, Schmutzler, Rita, Devilee, Peter, Stoppa-Lyonnet, Dominique and Dolbeault, Sylvie (2021). Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant. Breast, 60. S. 38 - 45. EDINBURGH: CHURCHILL LIVINGSTONE. ISSN 1532-3080

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Abstract

Objectives: Comprehensive breast cancer (BC) risk models integrating effects of genetic (GRF) and non-genetic risk factors (NGRF) may refine BC prevention recommendations. We explored the perceived information received on BC risk factors, and related characteristics, in female relatives of women with a BRCA1/2 or PALB2 pathogenic variant, undergoing BC risk assessment using the CanRisk(C) prediction tool. Methods: Of 200 consecutive cancer-free women approached after the initial genetic consultation, 161 (80.5%) filled in questionnaires on their perception of information received and wished further information on BC risk factors (e.g., being a carrier of a moderate risk altered gene, personal genetic profile, lifestyles). Multilevel multivariate linear models were performed accounting for the clinician who met the counselee and exploring the effect of counselees' socio-demographic, familial and psychological characteristics on the perceived extent of information received. Results: Perceived no/little information received and wish for further information were more frequent for NGRF (>50%) than for GRF, especially high-risk genes (<20%). Perceived amount of information received and desire for further information were inversely correlated (p=<0.0001). Higher education level related to lower perceived levels of information received on GRF. Younger counselees' age (beta = 0.13, p = 0.02) and less frequent engagement coping (e.g., inclination to solicit information) (beta = 0.24, p = 0.02) related to lower perceived information received about NGRF. Other assessed counselees' features were not found to be associated to GRF and NGRF information perception. Conclusions: Awareness of counselees' perceived lack of information on BC risk factors indicates a need to enhance evidence-based information on BC NGRF especially. (C) 2021 The Authors. Published by Elsevier Ltd.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Bredart, AnneUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
De Pauw, AntoineUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Anota, AmelieUNSPECIFIEDorcid.org/0000-0001-6896-1367UNSPECIFIED
Tuchler, AnjaUNSPECIFIEDorcid.org/0000-0001-9985-8397UNSPECIFIED
Dick, JuliaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Muller, AnitaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kop, Jean-LucUNSPECIFIEDorcid.org/0000-0002-6963-8411UNSPECIFIED
Rhiem, KerstinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schmutzler, RitaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Devilee, PeterUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Stoppa-Lyonnet, DominiqueUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Dolbeault, SylvieUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-601696
DOI: 10.1016/j.breast.2021.08.011
Journal or Publication Title: Breast
Volume: 60
Page Range: S. 38 - 45
Date: 2021
Publisher: CHURCHILL LIVINGSTONE
Place of Publication: EDINBURGH
ISSN: 1532-3080
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
PHYSICAL-ACTIVITY; COMMUNICATION; PERCEPTION; KNOWLEDGE; FAMILIESMultiple languages
Oncology; Obstetrics & GynecologyMultiple languages
URI: http://kups.ub.uni-koeln.de/id/eprint/60169

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