Comparison of individuals opting for BRCA1/2 or HNPCC genetic susceptibility testing with regard to coping, illness perceptions, illness experiences, family system characteristics and hereditary cancer distress

• Published in: Patient education and counseling 2007-01, Vol.65 (1), p.58-68
• Main Authors: van Oostrom, Iris, Meijers-Heijboer, Hanne, Duivenvoorden, Hugo J, Bröcker-Vriends, Annette H.J.T, van Asperen, Christi J, Sijmons, Rolf H, Seynaeve, Caroline, Van Gool, Arthur R, Klijn, Jan G.M, Tibben, Aad
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Adult; Attitude to Health; BRCA1/2; Breast Neoplasms - genetics; Cancer; Colorectal Neoplasms, Hereditary Nonpolyposis - genetics; Communication; Family - psychology; Female; Genes, BRCA1; Genes, BRCA2; Genetic Counseling; Genetic Predisposition to Disease - genetics; Genetic Testing - psychology; HNPCC; Humans; Internal Medicine; Logistic Models; Male; Mutation - genetics; Netherlands; Nursing; Pedigree; Prospective Studies; Psychological functioning; Risk Assessment; Social Support; Stress, Psychological - etiology; Stress, Psychological - psychology; Surveys and Questionnaires
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2006.05.006

Abstract Objective To study differences between individuals opting for genetic cancer susceptibility testing of a known familial BRCA1/2 and HNPCC related germline mutation. Methods Coping, illness perceptions, experiences with cancer in relatives and family system characteristics were assessed in 271 applicants for genetic testing before test result disclosure. Hereditary cancer distress, worry and cancer risk perception were assessed before, 1 week after, and 6 months after disclosure. Results Individuals from BRCA1/2 and HNPCC mutation families did not differ with regard to the number of experiences with cancer in relatives, grief symptoms, the course of cancer distress, worry and risk perception through time and most illness perceptions, coping responses and family characteristics. Individuals from BRCA1/2 families perceived hereditary cancer as more serious. They reported more frequently a passive coping style, cancer worry and a less open communication with their partner and children. Conclusion Besides subtle differences, psychological mechanisms may be mainly identical in individuals opting for BRCA1/2 and HNPCC susceptibility testing. Practice implications Based on our findings, using a similar counseling approach for individuals opting for BRCA1/2 or HNPCC genetic susceptibility testing is justified. In this approach, attention should be directed more to individual aspects than to the type of disorder.