title: Breast cancer genetic counseling among Dutch patients from Turkish and Moroccan descent: participation determinants and perspectives of patients and healthcare professionals.
abstract: Lower participation rates in cancer genetic counseling are observed among different ethnic minorities. The goal of our study is to gain insight into determinants of Turkish and Moroccan patients' participation in breast cancer genetic counseling and DNA testing, from the point of view of healthcare professionals and patients. Questionnaire-based telephone interviews about awareness, perceptions, and reasons for (non-) participation in cancer genetic counseling were conducted with 78 Dutch breast cancer patients from Turkish and Moroccan descent. The interviews were held in Arabic, Berber, Turkish, or Dutch by bilingual research assistants. Additionally, 14 breast cancer patients participated in one of two focus group meetings, and two focus groups were held with 11 healthcare professionals. SPSS and QSR Nvivo were used to examine the quantitative and qualitative data, respectively. Half of the total group of patients (N = 78) and 79% of patients eligible for genetic counseling and testing (N = 33) were aware of the possibility of genetic counseling. The most important determinants for nonparticipation in genetic counseling were experienced difficulties in patient-doctor communication, cultural factors (e.g., social norms), limited health literacy, limited knowledge of the family cancer history, and anxiety about cancer. Religious beliefs and knowing personal and family members' breast cancer risks were motives to obtain genetic counseling. Despite the fact that our study showed that Moroccan and Turkish women reported several personal motives to obtain genetic counseling and testing (GCT), patients and healthcare professionals experience significant language and health literacy difficulties, which make it harder to fully access health care such as genetic counseling and testing.
authors.affiliation: Department of Genetics, Division of Biomedical Genetics, University Medical Center Utrecht, PO Box 85090, 3508 AB, Utrecht, the Netherlands.
authors.forename: J E
authors.initials: JE
authors.lastname: Baars
authors.affiliation: NIVEL (Netherlands institute for health services research), Utrecht, the Netherlands.|Department of Primary and Community Care, Radboud University Medical Center, Nijmegen, the Netherlands.|Faculty of Health Sciences, University College of Southeast Norway, Drammen, Norway.
authors.forename: A M
authors.initials: AM
authors.lastname: van Dulmen
authors.affiliation: Department of Genetics, Division of Biomedical Genetics, University Medical Center Utrecht, PO Box 85090, 3508 AB, Utrecht, the Netherlands.
authors.forename: M E
authors.initials: ME
authors.lastname: Velthuizen
authors.affiliation: Department of Genetics, Division of Biomedical Genetics, University Medical Center Utrecht, PO Box 85090, 3508 AB, Utrecht, the Netherlands.
authors.forename: E
authors.initials: E
authors.lastname: van Riel
authors.affiliation: Department of Genetics, Division of Biomedical Genetics, University Medical Center Utrecht, PO Box 85090, 3508 AB, Utrecht, the Netherlands. M.G.E.M.Ausems@umcutrecht.nl.
authors.forename: M G E M
authors.initials: MG
authors.lastname: Ausems
keywords: Breast cancer; Ethnic minority; Genetic counseling; Referral