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Table 2 Characteristics of 36 studies reporting clinical, demographic, and/or psychosocial factors related to cancer risk perception in high risk populations not related to genetic susceptibility testing

From: Factors Influencing Cancer Risk Perception in High Risk Populations: A Systematic Review

First author, year Design Cancer Type No. sub-jects Age (years) Gender M/F/ M+F Tested Factors Influencing Risk Perception Study Synopsis
       Clinical Demographic Psychosocial  
Haas, 2005 [30] Observational, prospective cohort Breast 1619 Range 40-74 F Previous childbirth;
+ FH of breast cancer; BMI; Prior breast biopsy; Prior abnormal mammogram
Marital status; Education level
  Studied women's objective & subjective risks for developing BC. Younger women overestimated future BC risk. For women at average BC risk, Asian Pacific Islanders and women with FH of BC were more likely to overestimate risk. For women at high BC risk, younger women were more likely to accurately perceive risk, and black women (vs. whites) were less likely to accurately perceive risk.
Rowe, 2005 [31] Observational, cross-sectional Breast 66 Mean 40, Range 25-59 F + FH of breast cancer Marital status; Age; Ethnicity; Employment status Locus of Control;
Breast cancer-specific control
Studied women with & without FH of BC. Married women more likely to perceive lower risk of BC than unmarried women. Women with +FH of BC perceived higher risk for BC. Internal locus of control and breast cancer-specific control were significantly related to women's perceived likelihood of remaining free of breast cancer.
Gil, 2003 [47] Observational, case-control Breast 84 Range 18-53 F + FH of breast cancer    Studied distress, perception of BC risk, screening behaviors, coping skills, personality and quality of life in Spanish cohort of women with & without FH of BC. Women with FHBC overestimated their risk of developing breast cancer.
Lebel, 2003 [34] Observational, cross-sectional Breast 25 Mean 56 F + FH of breast cancer   Distress;
Venting & denial coping strategies
Interviewed women with suspicious mammograms at two time points: immediately after being put on biopsy wait-list and immediately before biopsy. Higher perceived risk of malignancy correlated with distress and use of venting and denial coping strategies.
Fang, 2003 [48] Observational, cross-sectional Ovarian 76 Mean 42, Range 22-71 F + FH of breast or ovarian cancer    Studied women with FH of ovarian cancer and their intention to undergo prophylactic oophorectomy. Perceived risk levels were not associated with family history of ovarian cancer or with family history of breast or ovarian cancer.
Hatcher, 2001 [26] Observational, prospective cohort Breast 143 Grp 1 median 38, Grp 2 median 40 F Prophylactic mastectomy status    Studied women with increased risk of developing BC who were offered bilateral prophylactic mastectomy and who accepted or declined the surgery. Acceptors were more likely than decliners to believe it inevitable that they would develop breast cancer.
Wellisch, 2001 [49] Observational, prospective cohort Breast 430 Mean 43, Range 15-78 F Depression status    Studied women who presented to a high risk breast cancer clinic. When estimating their own risk of developing breast cancer, women scoring above the CES-D (depression scale) cut-off point reported higher personal risk estimates than did women scoring below the cut-off point.
Audrain, 1997 [35] Observational, prospective cohort Breast; Ovarian 256 Mean 44, Range 21-73 F    General distress; Perceived control over BC Studied women with a family history of breast or ovarian cancer who self-referred for genetic counseling. Women with higher levels of general distress had heightened BC PR, though this effect was moderated by having low perceptions of control over the development of breast cancer.
Schwartz, 1995 [43] Observational, cross-sectional Ovarian 103 Mean 42, Range 18-74 F Age of diagnosis for FDR with ovarian cancer   Intrusive thoughts; Attentional Style; Mood disturbance Studied women with ≥1 FDR with ovarian cancer. Perceived risk of developing ovarian cancer was positively correlated with intrusive thoughts and monitoring, and was negatively correlated with the age of diagnosis for FDR relative with ovarian cancer.
Zikmund-Fisher, 2008 [50] Experimental Endometrial 631 Mean 59, Range 40-74 F    Numeracy Studied women with elevated BC risk. Higher numeracy was significantly associated with lower perceived risk of side-effects of tamoxifen, including endometrial cancer.
Mellon, 2008 [3] Observational, familial dyads Breast; Ovarian 292 Grp 1 mean 51, Grp 2 mean 41 F Cancer type of affected relative;
+FH of cancer
Cancer worry Studied dyads of adult breast & ovarian cancer survivors and their unaffected female relatives. Caucasian race was associated with higher risk perceptions, as was income, older age, family history of cancer, cancer type, and high levels of cancer worry.
Salsman, 2004 [13] Observational, cross-sectional Ovarian 624 Grp 1 mean 57, Grp 2 mean 57 F Ovarian cancer screening status    Studied women undergoing routine transvaginal sonography screening for ovarian cancer and an age and education-matched healthy comparison group. Perceptions of lifetime risk for OC did not differ between the two groups.
Beebe-Dimmer, 2004 [40] Observational, cross-sectional Prostate 111 Mean 54, Range 33-78 M + FH of prostate cancer Age; Marital status; Education Level Concern Studied men whose brothers had been diagnosed with prostate cancer. Men younger than their affected brother, those with more than one affected FDR, and those with higher levels of concern had higher estimates of personal risk for prostate cancer.
Lobb, 2004 [22] Observational Breast 158 Grp 1 mean 39, Grp 2 mean 51 F Receiving written summary of genetic counseling session    Studied women from high risk BC families to assess how communication regarding genetic testing for BC was associated with various features of communication. They found that having received a written summary of the results was associated with more accurate risk perception.
Andrykowski, 2002 [36] Observational, case-control Breast 176 Grp 1 mean 44, Grp 2 mean 45 F Undergoing breast biopsy   Impact of Events Scale-intrusion & avoidance Studied women with benign breast biopsy and a healthy comparison group. No differences were found between groups in perceived risk of BC. Perceived BC risk was significantly negatively associated with intrusion and avoidance scores on the Impact of Events Scale.
Royak-Schaler, 2002 [32] Observational, cross-sectional Breast 141 Range 23-81 F > 1 relative with cancer Race Having more complete discussion with doctor Studied FDRs of breast cancer patients. Provider discussions about FH and personal risk were accompanied by increases in risk perception and promoted compliance with screening goals.
Elit, 2001 [25] Observational, cross-sectional Ovarian 40 Mean 55 F Oophor-ectomy status    Studied women with FH of OC who had undergone prophylactic oophorectomy. Perceived risk for OC was found to decrease significantly after surgery.
Vernon, 2001 [27] Observational Colon 1955 No means given M +FH of polyps or colon cancer; Colon screening exam status Age; Education Level Degree of familial support; Cancer worry Studied male autoworkers who participated in a trial to increase CRC screening. At baseline, a positive association was found between PR of cancer and positive FH, family support for screening, and worry about being diagnosed.
Collins, 2000 [39] Observational Colon 127 Mean 47 M/F    Cancer worry Studied patients presenting to a familial CRC clinic. A significant negative association was found between PR of bowel cancer and cancer worry.
Erblich, 2000 [38] Observational, cross-sectional Breast 148 Mean 42 F Maternal death due to BC; Serving as caregiver for mother with BC   Anxiety; IES-intrusion & avoidance; General distress; BSI depression Studied women with and w/out FDRs with BC. Among women with FH of BC, perceived risk was positively correlated with anxiety, intrusion & avoidance thoughts on the Impact of Events Scale, and global distress.
Glanz, 1999 [16] Observational, cross-sectional Colon 426 Mean 50, Range 19-84 M/F   Education Level Awareness of CRC family history Studied FDRs of patients with CRC. Being a college graduate and having an awareness of a relative with CRC cancer were independently and positively associated with risk perception.
Zakowski, 1997 [19] Observational Breast 89 Mean 42, Range 23-55 F Objective cancer risk; +FH of breast cancer; Death of parent to cancer Age at time of parent(s)' death IES-intrusion & avoidance Studied women with and without FH of BC. Higher PR of BC was found in women with FH of BC and women whose parent(s) had died of cancer. Results suggested that high PR predicts high levels of intrusive thoughts and avoidance regarding BC.
Stefanek, 1995 [51] Observational Breast 164 Grp 1 mean 37, Grp 2 mean 38 F Prophylactic Mastectomy status    Studied women with ≥1 FDR diagnosed with BC who underwent prophylactic mastectomy, expressed an interested in surgery, or did not express an interest. Women who underwent surgery had significantly higher perceived risk than women in the non-interest group.
Lerman, 1994 [28] Observational, cross-sectional Breast Grp 1 n = 179, Grp 2 n = 238, Grp 3 n = 363 Grp 1 range 30-75, Grp 2 range 20-75, Grp 3 range 20+ F   Age   Studied women with a FH of BC presenting to three different clinics. At one site, women in the 30-34 and 50+ categories were significantly less likely to perceive themselves as having and elevated risk than were women in other age groups. No other significant differences by age were found in the two other study sites.
Bondy, 1992 [52] Observational, cross-sectional Breast 30604 Grp 1: 61% over age 60, Grp 2: 51% under age 50 F Objective risk based on Gail model; Degree of FH    Studied women with and w/out FDRs affected by BC. Women with the highest relative risk scores for breast cancer (based on the Gail model) more likely to perceive high lifetime risk of breast cancer compared to women in lower risk categories. Women with FDRs affected by breast cancer had higher perceived risk, particularly when those relatives were their mother and sister.
Blalock, 1990 [14] Observational, cross-sectional Colon 295 Grp 1 mean 56, Grp 2 mean 59 M/F   Race Self-perceived heredity Studied people with CRC-affected siblings and an average risk comparison group. High risk individuals were more likely to rate heredity as a risk-increasing factor than as a risk-decreasing factor, and whites in the high risk group were more likely than blacks to rate heredity as a risk-increasing factor.
Watson, 1999 [23] Observational, prospective cohort Breast 282 Median 37, Range 19-76 F Having undergone genetic counseling   Intrusive thoughts; Cancer worry Studied women with a FH of BC. Genetic counseling produced a modest shift in the accuracy of perceived lifetime risk of BC. Women with a higher than average PR of BC were more likely to report intrusive thoughts and cancer worry.
Cunningham, 1998 [37] Observational, case-control Breast 132 Grp 1 mean 50; Grp 2 mean 49 F    Cancer worry Studied women with benign breast problems and a healthy comparison group. BC risk perceptions were found to mediate differences between the BBP and healthy comparison group in breast cancer worry.
Miller, 2005 [42] Observational, prospective cohort Breast; Ovarian 279 Mean 46 F    Monitor status Studied women who expressed concerns about their risk for BC or OC during self-initiated calls to a Cancer Information Service. High monitors, who typically attend to and seek information, demonstrated greater increases in knowledge and perceived risk over the 6-month interval than low monitors.
Emery, 2007 [21] Experimental Breast; Colon; Ovarian 246 - M/F Referral to a genetics clinic    Studied patients referred to the Regional Genetics Clinic by practices randomized to use either Genetic Risk Assessment on the Internet with Decision Support (GRAIDS) software or current best practices. Patients who were not referred from GRAIDS practices to the genetics clinic showed lower mean risk perception than those who were referred.
Bjorvatn, 2007 [20] Observational, cross-sectional General Cancer Risk 213 Mean 42, Range 18-80 M/F Undergoing genetic counseling   Cancer worry Studied patients from genetic outpatient clinics of three Norway hospitals. Perceptions of risk were significantly reduced and more likely to be accurate after genetic counseling compared to before. After counseling, higher PR of developing cancer was found to be correlated with higher worry.
   Quillin, 2006 [45] Observational, cross-sectional Breast 899 Mean 50, SD 8 F + FH of cancer Race; Education Spiritual coping Studied women in the Women Improving Screening Through Education & Risk Assessment (WISER) study. Higher levels of spiritual coping were associated with a lower perception of BC risk, but only for women with a self-reported FH of cancer. African-Americans were more likely to perceive lower risk of BC than Caucasians.
Lipkus, 2006 [53] Experimental Colon 160 Grp 1 mean 56; Grp 2 mean 55; Grp 3 mean 58; Grp 4 mean 56 M/F Possession of colorectal cancer risk factors   Exposure to different types risk communi-cation; ambivalence to screening Studied adults who were off-schedule for having a fecal occult blood test. Participants who thought they had more CRC risk factors reported greater perceived absolute and comparative risk.
Cameron, 2006 [54] Observational, cross-sectional Breast 303 Range 18-82; Grp 1 mean 44; Grp 2 mean 43; Grp 3 mean 25 F +FH of breast cancer   Worry Studied general practitioner clinic attenders, university students, and FDRs of BC survivors. A moderate correlation between perceived risk and worry was found. FDRs of BC survivors reported higher perceived risk than university students and clinic attenders.
Madalinska, 2005 [55] Observational, cross-sectional Breast 846 Grp 1 mean 49; Grp 2 mean 47 F OC preventive measures    Studied women at high risk of OC. PR of developing BC was significantly lower among women who had undergone prophylactic bilateral salpingo-oophorectomy than women undergoing gynecologic screening.
Cappelli, 2005 [10] Observational, case-control Breast 110 Mean 16 F Family risk status    Studied pairs of adolescent daughters whose mothers had been treated for BC and daughters of healthy mothers. Compared to adolescent daughters of parents with no serious illnesses, daughters of mothers with BC reported elevated perceived risk of developing BC and an elevated risk of having a BRCA mutation.
  1. NOTE: Factors in italicized text indicate non-significant associations. Common abbreviations include PR = perceived risk; FH = family history; BC = breast cancer; CRC = colorectal cancer; OC = ovarian cancer; FDR = first-degree relative.