Long-term experiences with genetic consultation in people with hereditary breast and ovarian cancer

• Verfasst von: Eismann, Sabine [VerfasserIn]
• Verfasst von: Vetter, Lisa Marie Andrea [VerfasserIn]
• Verfasst von: Keller, Monika [VerfasserIn]
• Verfasst von: Bruckner, Thomas [VerfasserIn]
• Verfasst von: Golatta, Michael [VerfasserIn]
• Verfasst von: Hennigs, André [VerfasserIn]
• Verfasst von: Domschke, Christoph [VerfasserIn]
• Verfasst von: Dikow, Nicola [VerfasserIn]
• Verfasst von: Sohn, Christof [VerfasserIn]
• Verfasst von: Heil, Jörg [VerfasserIn]
• Verfasst von: Schott, Sarah [VerfasserIn]
• Titel: Long-term experiences with genetic consultation in people with hereditary breast and ovarian cancer
• Verf.angabe: Sabine Eismann, Lisa Vetter, Monika Keller, Thomas Bruckner, Michael Golatta, André Hennings, Christoph Domschke, Nicola Dikow, Christof Sohn, Jörg Heil, Sarah Schott
• E-Jahr: 2016
• Jahr: 10 June 2016
• Umfang: 8 S.
• Fussnoten: Gesehen am 15.12.2017
• Titel Quelle: Enthalten in: Archives of gynecology and obstetrics
• Ort Quelle: Berlin : Springer, 1870
• Jahr Quelle: 2016
• Band/Heft Quelle: 294(2016), 5, Seite 1011-1018
• ISSN Quelle: 1432-0711
• DOI: doi:10.1007/s00404-016-4133-7
• Datenträger: Online-Ressource
• Sprache: eng
• Sach-SW: Aged
• Sach-SW: Aged, 80 and over
• Sach-SW: Female
• Sach-SW: Humans
• Sach-SW: Middle Aged
• Sach-SW: Retrospective Studies
• Sach-SW: Breast cancer
• Sach-SW: Breast Neoplasms
• Sach-SW: Adult
• Sach-SW: Young Adult
• Sach-SW: Surveys and Questionnaires
• Sach-SW: BRCA
• Sach-SW: Cross-Sectional Studies
• Sach-SW: Genes, BRCA1
• Sach-SW: Genetic counseling
• Sach-SW: Genetic Counseling
• Sach-SW: Genetic Testing
• Sach-SW: Ovarian Neoplasms
• Sach-SW: Risk perception
• Sach-SW: Satisfaction
• K10plus-PPN: 156642707X

Abstract

PURPOSE: Advances in genetics and increased public awareness increased the demand for interdisciplinary genetic outpatient consultation (IOGC). Communicating cancer risk is complex, and ideally information transfer should be individualized. Although psychological experiences with genetic testing have been studied in detail, studies on long-term experiences with IOGC and information transfer are lacking. We assessed patients' understanding and satisfaction with IOGC in families at risk of hereditary breast and ovarian cancer (HBOC) with the aim of informing best clinical practice, improving compliance and informed decision-making. METHODS: Female counselees referred for IOGC between July 1, 2009 and July 1, 2011 were eligible. Data were collected using a 47-item postal questionnaire to assess sociodemographic, psychological, behavioral parameters. Overall satisfaction and personal usefulness of IOGC were assessed with a five-point, and risk perception with a visual analog scale. Data were analyzed using Spearman rank, Wilcoxon U or Chi-squared test. RESULTS: 612 (72 %) of 849 women participated reported being highly satisfied (75 %, n = 430) and declared personal usefulness (73 %, n = 421) on average 3.5 years after IOGC. Women deemed "high risk" assessed their risk of developing BC as significantly higher than non-high-risk counselees (3.2 versus 3.0, p = 0.00484). Risk perception was lower in BRCA1/2 mutation carriers than in women with unclassified variants or no mutation (2.8 versus 3.5 and 3.1, respectively). CONCLUSION: Women with an HBOC background have additional needs to achieve long-term satisfaction after IOGC. Prospective studies are required to optimize care for the increasing number of people who seek genetic consultation, particularly as the complexity of genetics knowledge increases.