Genomics Day 2005: Genomics Day 2005: Public Health Genomics at CDC
Group 4: Public Health Research and Practice
Designing a study to examine family history, risk perception, cancer worry and use of ovarian cancer screening
Peipins LA, Hawkins N, Coughlin S, Dawkins N.
Division of Cancer Prevention and Control, NCCDPHP, CDC
Aims: We describe the design of a study to examine the effects of women's family history of cancer, their knowledge about ovarian cancer, their worry or anxiety and their perceived risk of cancer on the likelihood of being screened for ovarian cancer through CA125 and/or transvaginal ultrasound testing. In designing this study, we hypothesized a pathway leading from actual risk (as measured by family history) through perceived risk through intent to undergo screening and actual screening behavior.
Background: Family history is an important risk factor for ovarian cancer. Lifetime risk of ovarian cancer for women with no affected relatives is one in 70, and the risk for women with a more extensive family history of ovarian cancer or of both breast and ovarian cancers may be as high as 40%. It is only for high-risk women that the currently available screening modalities of CA125 and transvaginal ultrasound are recommended. Studies indicate that women generally overestimate their risk for cancer irrespective of their objective risk as determined by their age and family history. Moreover, recent studies found that women most likely to report high levels of perceived risk and high levels of screening for ovarian cancer were not always those at highest risk. Additional research is needed to understand the discrepancy between perceived and ‘objective' risk as defined by family history of cancer and on how a woman's perceived risk is shaped by her knowledge and beliefs about ovarian cancer and her experiences with relatives or friends who have had cancer.
1) What are the important independent predictors of a high perception of risk for ovarian cancer? 2) What characteristics influence a woman's likelihood of being screened for ovarian cancer through CA125 and/or transvaginal ultrasound? 3) Does a positive family history of cancer and a high perception of risk lead to increased cancer worry or anxiety?
We propose to conduct an initial telephone screening of up to 15,000 women aged of 30 and 75 years, recruited from an managed care population, to identify a subgroup of high-risk women. Approximately 1,400-2,500 randomly selected women from this population (including an over-sampling of high-risk women) will be surveyed about family history of cancer, screening activities, perceived risk, cancer worry, anxiety, coping disposition and experience with friend or relative with cancer. Finally, we will conduct a follow up of the study participants to assess screening activities (CA125 and transvaginal untrasound procedures) using abstraction of administrative records.
What contributions will this study make?
Accuracy of perceived risk is important for informed decision making about screening and preventive strategies that discourage overestimation of risk and concomitant worry and encourage appropriate screening. To minimize psychological distress and overestimation of risk, we need to know more about the processes involved in risk perception and about the constellation of affects, beliefs and expectations that influence screening behavior. This study will contribute to our understanding of decision-making by elucidating the interplay between the emotional and cognitive aspects of risk perception (experience of cancer) and the objective or logical aspects of risk assessment (family history of cancer) with respect to screening behavior. The results of this investigation could have important implications for efforts to maximize screening effectiveness and to minimize worry for average- and elevated-risk women.
Sarah Kobrin, PhD, Program Director, Applied Cancer Screening Research Branch, National Cancer Institute, Rockville, MD 20852