Clinical Trial: Psychosocial Aspects of Genetic Testing for Hereditary Nonpolyposis Colon Cancer

Study Status: Completed
Recruit Status: Completed
Study Type: Observational

Official Title: Psychosocial Aspects of Genetic Testing for HNPCC

Brief Summary:

This study, conducted by NHGRI and the M.D. Anderson Cancer Center in Houston, Texas, will develop statistical approaches for modeling family social structure and apply these models to explore the role of family social structure in participation in genetic testing and counseling, disclosure of test results and adjustment to risk status. With recent genetic advances and the ability to test for hereditary illnesses, methods that provide an understanding of the family social structure and how that structure affects the dissemination of genetic risk information are increasingly important.

The data for this study were collected by the M.D. Anderson Cancer Center as part of a study on family communication and family functioning with regard to genetic testing for hereditary nonpolyposis colon cancer (HNPCC). Relatives of people with HNPCC are more likely than the general population to get colon cancer and other types of cancer if they have inherited the gene alteration (mutation) that predisposes to the disease. This alteration can be passed on from a parent to some or all of his or her children.

In the M.D. Anderson Cancer Center study, telephone interviews were conducted with 80 adult members of 16 extended families with a known gene alteration predisposing for HNPCC. These participants included people who had been diagnosed with an HNPCC syndrome cancer, their unaffected family members who were at risk of carrying a gene mutation for HNPCC, and their spouses. Participants were interviewed about their feelings, moods, coping style, and relationships with their spouse, relatives, and friends, about their willingness to have genetic testing, and about their feelings and beliefs about colon cancer, cancer screening and genetic testing and counseling. Some participants were asked about their family communication style and how the f

Detailed Summary: The current research has two objectives: (1) development of statistical methods for modeling family systems, and (2) characterization of the psychosocial and relational aspects of families with a known mutation for hereditary nonpolyposis colon cancer (HNPCC). This work focuses on the family, and the family's social structure, as the unit of study. Data were collected between 8/1999 and 6/2002 at the University of Texas MD Anderson Cancer Center (UTMDACC) as part of a qualitative study of family communication and family functioning with regard to HNPCC genetic testing. Semi-structured telephone interviews were conducted with 80 adult members of 16 extended families with a known HNPCC-predisposing mutation. Family members included those who had been diagnosed with a HNPCC syndrome cancer, unaffected individuals who are at risk of carrying a mutation, and their spouses. The semistructured interview guide was designed to define family network members and to measure the social relations within each respondent's familial network. Social network data were collected describing the support, communicative, and affective relationships between respondents' and members of their family. Both positive (e.g. closeness) and negative (e.g. conflict) relationships were measured. Communication relations specific to disclosure of mutation status, cancer risk, participation in genetic testing and counseling efforts and surveillance practices were obtained. In addition to relational measurements, demographic, health-related (e.g. previous cancer diagnoses, adherence to surveillance regimens), psychosocial (e.g. distress, coping) and behavioral (e.g. participation in genetic testing) measures were obtained. The measurement methodology involved the use of interdependent ego-centered networks. The respondents, or egos, defined those persons (alters) who they perceived to be members of their family. Each respondent was then interviewed to obtain relational measurements (e.g. social support,
Sponsor: National Human Genome Research Institute (NHGRI)

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Information By: National Institutes of Health Clinical Center (CC)

Dates:
Date Received: June 19, 2006
Date Started: September 28, 2005
Date Completion: August 2, 2010
Last Updated: January 24, 2017
Last Verified: August 2, 2010