title: The Quality of Genetic Counseling and Connected Factors as Evaluated by Male BRCA1/2 Mutation Carriers in Finland.
abstract: 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.
authors.affiliation: Research Unit of Nursing Science and Health Management, University of Oulu, P.O. Box 5000, 90014 University of Oulu, Oulu, Finland. outi.kajula@student.oulu.fi.|Medical Research Center, Oulu University Hospital and University of Oulu, Oulu, Finland. outi.kajula@student.oulu.fi.|Department of Clinical Genetics, Oulu University Hospital, Oulu, Finland. outi.kajula@student.oulu.fi.
authors.forename: Outi
authors.initials: O
authors.lastname: Kajula
authors.affiliation: Research Unit of Nursing Science and Health Management, University of Oulu, P.O. Box 5000, 90014 University of Oulu, Oulu, Finland.|Medical Research Center, Oulu University Hospital and University of Oulu, Oulu, Finland.
authors.forename: Maria
authors.initials: M
authors.lastname: Kääriäinen
authors.affiliation: Medical Research Center, Oulu University Hospital and University of Oulu, Oulu, Finland.|Department of Clinical Genetics, Oulu University Hospital, Oulu, Finland.
authors.forename: Jukka S
authors.initials: JS
authors.lastname: Moilanen
authors.affiliation: Research Unit of Nursing Science and Health Management, University of Oulu, P.O. Box 5000, 90014 University of Oulu, Oulu, Finland.|Medical Research Center, Oulu University Hospital and University of Oulu, Oulu, Finland.|Northern Ostrobothnia Hospital District, Oulu, Finland.
authors.forename: Helvi
authors.initials: H
authors.lastname: Kyngäs
mesh_terms: D000328:Adult; D018567:Breast Neoplasms, Male / Q000235:genetics*; D005387:Finland; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D006579:Heterozygote; D006801:Humans; D008297:Male; D009154:Mutation; D011788:Quality of Life
keywords: BRCA1; BRCA2; Genetic counseling; Male carriers; Quality