Understanding Patterns of Health Communication in Families at Risk for Hereditary Nonpolyposis Colorectal Cancer: Examining the Effect of Conclusive Versus Indeterminate Genetic Test Results

REFERENCES

• American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure . 1998 . ASHG Statement: Professional disclosure of familial genetic information . American Journal of Human Genetics , 62 : 474 – 483 .
   PubMed Web of Science ®Google Scholar
• Anderson , C. J. , Wasserman , S. and Crouch , B. 1999 . A p* primer . Logit models for social networks. Social Networks , 21 : 37 – 66 .
   Web of Science ®Google Scholar
• Baron , R. M. and Kenny , D. A. 1986 . The moderator–mediator variable distinction in social psychological research: Conceptual, strategies, and statistical considerations . Journal of Personality and Social Psychology , 51 : 1173 – 1182 .
   PubMed Web of Science ®Google Scholar
• Barrow , E. , Robinson , L. , Alduaij , W. , Shenton , A. , Clancy , T. , Lalloo , F. … and Evans , D. G. 2009 . Cumulative lifetime incidence of extracolonic cancer in Lynch syndrome . A report of 121 families with proven mutations Clinical Genetics , 75 : 141 – 149 .
   Google Scholar
• Beeson , D. and Doksum , T. 2001 . “ Family values and resistance to genetic testing ” . In Bioethics in social context , Edited by: Hoffmaster , C. B. 153 – 179 . Philadelphia : Temple University Press .
   Google Scholar
• Berkman , L. F. and Glass , T. 2000 . “ Social integration, social networks, social support, and health ” . In Social epidemiology , Edited by: Berkman , L. F. and Kawachi , I. 137 – 173 . New York : Oxford University Press .
   Google Scholar
• Berkman , L. F. , Glass , T. , Brissette , I. and Seeman , T. A. 2000 . From social integration to health: Durkheim in the new millennium . Social Science Sci. & Medicine , 51 : 843 – 857 .
   PubMed Web of Science ®Google Scholar
• Bryk , A. and Raudenbush , S. W. 1992 . Hierarchical linear models for social and behavioral research: Applications and data analysis methods , Newbury Park, CA : Sage .
   Google Scholar
• Carlsson , C. and Nilbert , M. 2007 . Living with hereditary non-polyposis colorectal cancer; Experiences from and impact of genetic testing . Journal of Genetic Counseling , 16 : 811 – 820 .
   PubMedGoogle Scholar
• Ersig , A. L. , Ayres , L. , Hadley , D. W. and Koehly , L. M. 2010 . Explanations of risk in families without identified mutations for hereditary non-polyposis colorectal cancer . Journal of Nursing Scholarship , 42 : 139 – 146 .
   PubMed Web of Science ®Google Scholar
• Ersig , A. L. , Williams , J. K. , Hadley , D. W. and Koehly , L. M. 2009 . Communication, encouragement, and cancer screening in families with and without mutations for hereditary non-polyposis colorectal cancer: A pilot study . Genetics in Medicine , 11 : 728 – 734 .
   PubMed Web of Science ®Google Scholar
• Hadley , D. W. , Jenkins , J. , Dimond , E. , Nakahara , K. , Grogan , L. , Liewehr , D. J. … and Kirsch , I. 2003 . Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer . Archives of Internal Medicine , 163 : 573 – 582 .
   PubMedGoogle Scholar
• Hadley , D. W. , Jenkins , J. F. , Dimond , E. , de Carvalho , M. , Kirsch , I. and Palmer , C. G. C. 2004 . Colon cancer screening practices after genetic counseling and testing for hereditary nonpolyposis colorectal cancer . Journal of Clinical Oncology , 22 : 39 – 44 .
   PubMed Web of Science ®Google Scholar
• Jarvinen , H. J. , Aarnio , M. , Mustonen , H. , Aktan-Collan , K. , Aaltonen , L. A. , Peltomaki , P. … and Mecklin , J. P. 2000 . Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancer . Gastroenterology , 118 : 829 – 834 .
   PubMed Web of Science ®Google Scholar
• Koehly , L. M. , Peters , J. A. , Kenen , R. , Hoskins , L. M. , Ersig , A. L. , Kuhn , N. R. … and Greene , M. H. 2009 . Characteristics of health information gatherers, disseminators, and blockers within families at risk of hereditary cancer: Implications for family health communication interventions . American Journal of Public Health , 99 : 2203 – 2209 .
   PubMed Web of Science ®Google Scholar
• Koehly , L. M. , Peterson , S. K. , Watts , B. G. , Kempf , K. K. , Vernon , S. W. and Gritz , E. R. 2003 . A social network analysis of communication about hereditary non-polyposis colorectal cancer genetic testing and family functioning . Cancer Epidemiology, Biomarkers & Prevention , 12 : 304 – 313 .
   PubMed Web of Science ®Google Scholar
• Lindor , N. M. , Petersen , G. M. , Hadley , D. W. , Kinney , A. Y. , Miesfeldt , S. , Lu , K. H. … and Press , N. 2006 . Recommendations for the care of individuals with an inherited predisposition to Lynch syndrome: A systematic review . Journal of the American Medical Association , 296 : 1507 – 1517 .
   PubMed Web of Science ®Google Scholar
• McCann , S. , MacAuley , D. , Barnett , Y. , Bunting , B. , Bradley , A. , Jeffers , L. … and Morrison , P. J. 2009 . Family communication, genetic testing and colonoscopy screening in hereditary non-polyposis colon cancer: A qualitative study . Psycho-Oncology , 18 ( 11 ) : 1208 – 1215 .
   PubMed Web of Science ®Google Scholar
• McPherson , M. , Smith-Lovin , L. and Cook , J. M. 2001 . Birds of a feather: Homophily in social networks . Annual Review of Sociology , 27 : 415 – 444 .
   Web of Science ®Google Scholar
• Mesters , I. , Ausems , M. , Eichhorn , S. and Vasen , H. F. A. 2005 . Informing one's family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): A retrospective exploratory study . Familial Cancer , 4 : 163 – 167 .
   PubMed Web of Science ®Google Scholar
• Palmquist , A. E. L. , Koehly , L. M. , Peterson , S. K. , Shegog , M. , Vernon , S. W. and Gritz , E. R. 2010 . “The cancer bond”: Exploring the formation of cancer risk perception in families with Lynch syndrome . Journal of Genetic Counseling , 19 ( 5 ) : 473 – 486 .
   PubMed Web of Science ®Google Scholar
• Patenaude , A. F. , Dorval , M. , DiGianni , L. S. , Schneider , K. A. , Chittenden , A. and Garber , J. E. 2006 . Sharing BRCA1/2 test results with first-degree relatives: Factors predicting who women will tell . Journal of Clinical Oncology , 24 : 700 – 706 .
   PubMed Web of Science ®Google Scholar
• Peterson , S. K. 2005 . The role of the family in genetic testing: Theoretical perspectives, current knowledge, and future directions . Health Education & Behavior , 32 : 627 – 639 .
   PubMed Web of Science ®Google Scholar
• Peterson , S. K. , Watts , B. G. , Koehly , L. M. , Vernon , S. W. , Baile , W. F. , Kohlmann , W. K. … and Gritz , E. R. 2003 . How families communicate about HNPCC genetic testing: Findings from a qualitative study . American Journal of Medical Genetics, Part C, Seminars in Medical Genetics , 119C : 78 – 86 .
   PubMed Web of Science ®Google Scholar
• Quehenberger , F. , Vasen , H. F. A. and van Houwelingen , H. C. 2005 . Risk of colorectal and endometrial cancer for carriers of mutations of the hMLH1 and hMSH2 gene: Correction for ascertainment . Journal of Medical Genetics , 42 : 491 – 496 .
   PubMed Web of Science ®Google Scholar
• Raudenbush , S. W. , Bryk , A. and Congdon , R. 2004 . HLM6: Hierarchical linear & nonlinear modeling (version 6.06) , Lincolnwood, IL : SSI Scientific Software International .
   Google Scholar
• Rolland , J. S. and Williams , J. K. 2005 . Toward a biopsychosocial model for 21st-century genetics . Family Process , 44 : 3 – 24 .
   PubMed Web of Science ®Google Scholar
• Shiloh , S. , Koehly , L. M. , Jenkins , J. , Martin , J. and Hadley , D. W. 2008 . Monitoring coping style moderates emotional reactions to genetic testing for hereditary non-polyposis colorectal cancer: A longitudinal study . Psycho-Oncology , 17 : 746 – 755 .
   PubMed Web of Science ®Google Scholar
• Snijders , T. A. B. and Bosker , R. J. 1999 . Multilevel analysis: An introduction to basic and advanced multilevel modeling , Thousand Oaks, CA : Sage .
   Google Scholar
• Stoffel , E. M. , Ford , B. , Mercado , R. C. , Punglia , D. , Kohlmann , W. , Conrad , P. … and Syngal , S. 2008 . Sharing genetic test results in Lynch syndrome: Communication with close and distant relatives . Clinical Gastroenterology and Hepatology, 6 , : 333 – 338 .
   Google Scholar
• Vadaparampil , S. T. , Wey , J. P. and Kinney , A. Y. 2004 . Psychosocial aspects of genetic counseling and testing . Seminars in Oncology Nursing , 20 : 186 – 195 .
   PubMedGoogle Scholar
• Wasserman , S. and Faust , K. 1994 . Social network analysis: Methods and applications , New York : Cambridge University Press .
   Google Scholar
• Wilson , B. J. , Forrest , K. , van Teijlingen , E. R. , McKee , L. , Haites , N. , Matthews , E. … and Simpson , S. A. 2004 . Family communication about genetic risk: The little that is known . Community Genetics , 7 : 15 – 24 .
   PubMedGoogle Scholar