Genetic testing is a component of disease risk assessment for familial cancers. Identification of a causative mutation allows confirmation of heightened risk and enables intensive cancer screening. Up to half of individuals at risk for hereditary nonpolyposis colorectal cancer (HNPCC) receive indeterminate genetic test results, in which no mutation is identified. These index cases and their biological relatives remain at heightened risk for HNPCC-associated cancers and should continue intensive screening. The purpose of this mixed methods study was to examine the influence of the social network and its psychosocial mechanisms on the psychological and behavioral response to indeterminate HNPCC genetic test results. Results are presented in three papers.
The first paper presents stories about risk in families without identified HNPCC mutations. Data were gathered using semi-structured interviews. Narrative analysis was used to analyze the stories and develop a story typology. Five types of stories emerged: biological, exceptional, idiosyncratic, mixed, and undeveloped. Stories addressed causes of and risk factors for HNPCC cancers. Types of stories told by members of the same biological families varied. Stories were not associated with reciprocal communication, but were consistently related to discussions of cancer screening.
The second paper presents an analysis of communication networks, and the third paper focuses on screening behavior. Social network analysis examined individual and relational factors associated with communication and colonoscopy frequency, and compared families with and without known HNPCC mutations. Respondents from families without identified mutations communicated about genetics and risk for HNPCC with a smaller proportion of their social networks than respondents from mutation-positive families. Individual and relational factors, such as age, kinship tie, and social support, were associated with communication. There were no significant differences in colonoscopy frequency between families with and without known mutations. Comparative perceived risk for colorectal cancer, communication about HNPCC, and encouragement to screen for HNPCC were significantly associated with more frequent colonoscopy.
Results demonstrate the influence of social network characteristics and mechanisms on the psychological and behavioral response in families at risk for HNPCC. Respondents did not focus on genetic test results, leading to few differences between families with and without identified mutations.
|Advisor:||Williams, Janet K.|
|School:||The University of Iowa|
|School Location:||United States -- Iowa|
|Source:||DAI-B 71/05, Dissertation Abstracts International|
|Keywords:||Familial cancers, Family research, Genetic testing, HNPCC, Hereditary nonpolyposis colorectal cancer, Indeterminate genetic test results|
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