Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant
Résumé
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© 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=<.0001). Higher education
level related to lower perceived levels of information received on GRF. Younger counselees’ age (ß
=0.13, p=0.02) and less frequent engagement coping (e.g., inclination to solicit information) (ß =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.
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