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Psychosocial Aspects of Genetic Testing for HNPCC

18 Years
82 Years
Not Enrolling
HNPCC, Hereditary Nonpolyposis Colon Cancer

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Trial Information

Psychosocial Aspects of Genetic Testing for HNPCC

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, communication) for each of their alters.
Respondents who were members of the same family may name each other as family members and
also may have alters in common. This interdependency based on overlapping family membership
needs to be accounted for in the statistical approaches used to analyze the data. The
primary goal of the current project is to develop and refine statistical models for
interdependent ego-centered networks. The developed models will then be used to investigate
the role of the familial social structure in communications about genetic testing and
counseling, disclosure of mutation status, participation in genetic testing and counseling
efforts, and adjustment to risk status.

Inclusion Criteria


Signed consent

Ability to speak, read, and write English

Diagnosis of adenocarcinoma of the colon or rectum (CRC) patients who test positive for
HNPCC mutations, or adult FDR of HNPCC mutation carriers, or spouses of CRC patient or FDR
of HNPCC mutation carriers.


Presence of current major psychiatric disorder as defined by the

DSM-IV, 2) age less than 18 years.

Type of Study:


Study Design:



United States: Federal Government

Study ID:




Start Date:

September 2005

Completion Date:

August 2010

Related Keywords:

  • Hereditary Nonpolyposis Colon Cancer
  • Family Systems
  • Communication
  • Information Diffusion
  • Social Networks
  • Family Dynamics
  • Colonic Neoplasms
  • Colorectal Neoplasms, Hereditary Nonpolyposis



National Human Genome Research Institute (NHGRI), 9000 Rockville Pike Bethesda, Maryland  20892