The Quality of Genetic Counseling and Connected Factors as Evaluated by Male BRCA1/2 Mutation Carriers in Finland
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There is little written about the quality of genetic counseling for men with the BRCA1/2 mutation. The purpose of this study was to describe the quality of genetic counseling and connected factors according to Finnish male BRCA1/2 mutation carriers’ (n = 35) perspectives and reasons for seeking genetic counseling. Data were collected from the Departments of Clinical Genetics at five Finnish university hospitals. The exploratory study design was conducted using a 51-item questionnaire based on a previously devised quality of counseling model and analyzed using non-parametric tests and principle content analysis. The satisfaction level with genetic counseling was high, especially with regard to the content of genetic counseling. The benefit of genetic counseling on the quality of life differed significantly (p < 0.001–0.009) from other factors. In particular, genetic counseling was in some cases associated to reduce the quality of life. Only 49 % of the male carriers felt they received sufficient counseling on social support. Attention to individual psychosocial support was proposed as an improvement to genetic counseling. Primary and secondary reasons for seeking genetic counseling and background information, such as education, affected the perceived quality of genetic counseling. The results of the study could be used to tailor genetic counseling for male BRCA1/2 mutation carriers.
KeywordsBRCA1 BRCA2 Male carriers Genetic counseling Quality
The authors would like to thank Drs Kristiina Aittomäki, Jaakko Ignatius, Tarja Mononen, Kalle Simola and the assistants at the Departments of Clinical Genetics at the participating university hospitals for helpful discussions and data collection. We thank genetic nurses at the Departments of Clinical Genetics for sharing their expertise in the instrument developing process. M.Sc. Helena Laukkala is thanked for statistical analysis guidance. We also thank all male carriers who participated in this study. This study was partly supported by the Department of Clinical Genetics at Oulu University Hospital (Genetic Diseases in Northern Finland research group).
Conflict of Interest
Outi Kajula, Maria Kääriäinen, Jukka S. Moilanen and Helvi Kyngäs declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.
No Animal studies were carried out by the authors for this article.
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