Familial breast cancer: Genetic counseling over time, including patients expectations and initiators considering the Angelina Jolie effectReport as inadecuate




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Purpose

The German Consortium for hereditary breast-ovarian cancer GC-HBOC aims for nationwide access to professional, individualized yet structured care for families at high risk. The identification of such families remains key for optimal care. Our study evaluates counselees’ characteristics, referral practices, expectations and motivations in respect to their first genetic consultation. The impact of the Angelina Jolie Effect AJE was prospectively assessed.

Methods

All counselees could participate through a questionnaire. Groups were built in respect to neoadjuvant chemotherapy FT and before-after AJE.

Results

The 917 88.5% counselees FT: 8.2% were on average female 97.3%, with a mean age of 44.6, had children 71.9%, higher education 88%, personal 46.4% or at least one first-degree relative 74.6% with BC-OC or known BRCA1-2 mutation 11.8%, were in a relationship 76.1%, and living in a village 40.7%. The AJE is associated with significantly fewer cancelations p = 0.005, more attendance among men 4.2% vs. 0.8%, p = 0.002, and people with familial BRCA1-2 14.8% vs. 7.5%, p = 0.003. The majority seek information regarding their cancer risk 83% or relatives’ risk 74.8%, HBOC 69.1%, and surveillance programs for themselves 66.6% or relatives 60.6%.

Conclusion

Enhanced media awareness of genetic cancer motivates patients, including other patient groups. A higher number of participants, including more men, are attending GC due to the AJE. In terms of the rising complexity of genetic testing, the analysis of patients’ expectations and initiators for GC suggests that there is an urgent need to develop to participate motivation analysis. The factors revealed as impediments to accessing GC-HBOC guide recommendations to optimize access to genetic counseling. Medical educational programs for primary gynecologists and families at risk might be options to reach more participants.



Author: Christina Evers , Christine Fischer , Nicola Dikow, Sarah Schott

Source: http://plos.srce.hr/



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