This study proposes to identify factors influencing decision-making regarding genetic testing for Hereditary Nonpolyposis Colorectal Cancer (HNPCC) and the psychological and behavioral outcomes of the testing process. HNPCC is an inherited form of cancer that predisposes persons in such families to multiple kinds of cancer, most notably colon and endometrial cancer. Biological relatives in families with a known HNPCC mutation complete a baseline questionnaire assessing knowledge, expectations, mood, attitudes, perceived cancer risk, cancer worries, family relationships, spirituality, coping and health beliefs. Participants are then provided with an educational/counseling session focused on HNPCC, the availability of genetic testing, its risks, limitations and potential benefits, and cancer screening recommendations for families with HNPCC. Participants are then presented with a choice of whether or not to undergo genetic testing. Those choosing genetic testing undergo a separate informed consent specifically focused on the process of genetic testing and the potential risks, benefits and limitations of genetic testing. Psychological and behavioral outcomes are reassessed through telephone questionnaire at 6 months, 1 and 3 years following risk notification or the decision not to undergo testing. For those receiving genetic test results, notification occurs in person along with discussion of available surveillance options. Follow-up counseling and support are provided for all individuals participating in the study. To date, 388 individuals have completed baseline questionnaires, 346 individuals have completed 6- month follow-up questionnaires, 331 have completed 1 year questionnaires, and 178 have completed 3 year follow-up surveys. We have initiated an addendum to the parent project that aims to characterize the family communication and support system and how the structure of this system is associated with decisions to undertake testing and cancer screening practices. Family system variables are assessed via a brief telephone interview. Additionally, genetically at risk, but non-participating family members and relatives not at risk for inheriting an HNPCC associated gene mutation will be recruited through their participating relatives, to consider completion of a single, brief questionnaire and the family system interview. The non-participant questionnaire assesses demographic information, attitudes/concerns towards genetic testing, percieved risk of cancer, cancer screening behaviors, and characteristics of family communication about HNPCC. To date, 100 individuals have completed the non-participant survey and 292 have completed the family systems interview. The protocol is now closed to new recruitment, however, the study team will continue follow-up of participating families and analyze data for manuscript development. We continue to learn from these data the role of family context in members adaptation to their risk of cancer. From this project we have published three manuscripts in 2011-2012. These papers, in large part, consider the factors associated with families'communication about their risk of cancer and familial roles in encouraging preventative screening practices for those at increased cancer risk. Additionally, we have three manuscripts that are currently in preparation which aim to understand further the family context associated with improved adaptation to genetic risk of disease.

Project Start
Project End
Budget Start
Budget End
Support Year
18
Fiscal Year
2012
Total Cost
$40,079
Indirect Cost
Name
National Human Genome Research Institute
Department
Type
DUNS #
City
State
Country
Zip Code
Morris, Bronwyn A; Hadley, Donald W; Koehly, Laura M (2013) The role of religious and existential well-being in families with Lynch syndrome: prevention, family communication, and psychosocial adjustment. J Genet Couns 22:482-91
Palmquist, Aunchalee E L; Upton, Rachel; Lee, Seungjin et al. (2011) Beliefs about cancer and diet among those considering genetic testing for colon cancer. J Nutr Educ Behav 43:150-6
Ersig, Anne L; Hadley, Donald W; Koehly, Laura M (2011) Understanding patterns of health communication in families at risk for hereditary nonpolyposis colorectal cancer: examining the effect of conclusive versus indeterminate genetic test results. Health Commun 26:587-94
Hadley, D W; Ashida, S; Jenkins, J F et al. (2011) Colonoscopy use following mutation detection in Lynch syndrome: exploring a role for cancer screening in adaptation. Clin Genet 79:321-8
Ashida, Sato; Hadley, Donald W; Goergen, Andrea F et al. (2011) The importance of older family members in providing social resources and promoting cancer screening in families with a hereditary cancer syndrome. Gerontologist 51:833-42
Hadley, Donald W; Ashida, Sato; Jenkins, Jean F et al. (2010) Generation after generation: exploring the psychological impact of providing genetic services through a cascading approach. Genet Med 12:808-15
Ersig, Anne L; Ayres, Lioness; Hadley, Donald W et al. (2010) Explanations of risk in families without identified mutations for hereditary nonpolyposis colorectal cancer. J Nurs Scholarsh 42:139-46
Ersig, Anne L; Hadley, Donald W; Koehly, Laura M (2009) Colon cancer screening practices and disclosure after receipt of positive or inconclusive genetic test results for hereditary nonpolyposis colorectal cancer. Cancer 115:4071-9
Shiloh, S; Koehly, L; Jenkins, J et al. (2008) Monitoring coping style moderates emotional reactions to genetic testing for hereditary nonpolyposis colorectal cancer: a longitudinal study. Psychooncology 17:746-55
Hadley, Donald W; Jenkins, Jean F; Steinberg, Seth M et al. (2008) Perceptions of cancer risks and predictors of colon and endometrial cancer screening in women undergoing genetic testing for Lynch syndrome. J Clin Oncol 26:948-54