In total, 460 women reported that they were informed about HNPCC: 198 women (43%) had received genetic counseling (of whom 53% had received genetic counseling more than 3 years before entry into the study); 108 (23%) had been informed by letter from the HNPCC register; and 154 (33%) had been reformed by their relatives. Overall, 302 women (65%) reported that they were aware of the increased endometrial cancer risk: 212 (47%) had known about their genetic predisposition for more than 6 years; 191 (41%) reported family history of gynecologic cancer; and 269 (60%) reported that they anticipated their risk for endometrial cancer was higher compared with that of the background population.
In univariable analyses, the awareness of endometrial cancer was significantly related to age younger than 65 years (P=.02), high educational level (P<.001), genetic counseling (P<.001), family history of gynecologic cancer (P<.001), and high perceived risk of endometrial cancer (P<.001). The awareness was greater in women from Lynch families compared with women from Amsterdam or Amsterdam-suspected families; however, the difference was not statistically significant (Table 3).
In the multivariable analyses, after adjusting for the variables of interest, women with university-degree education (P=.01), women who had a close relative with a gynecologic cancer (P=.002), and women with high perceived risk of endometrial cancer (P<.001) were more likely to be aware of endometrial cancer risk. Although women who had received genetic counseling were more likely to be aware of their cancer risk, the difference was not statistically significant in these analyses (P=.07) (Table 3).
Overall, 312 women (67%) reported attendance at gynecologic screening; gynecologic examinations included 267 (86%) transvaginal ultrasound examinations, 80 (26%) endometrial biopsies, and 48 (15%) serum CA 125 tests. Fifty-eight women (19%) reported having had annual screening visits, 205 women (66%) had biennial screening visits, and 39 women (13%) reported that they, so far, had one screening visit. Univariable analyses showed that attendance at endometrial cancer screening was significantly related to age between 45 and 54 years (P=.006), genetic counseling (P=.001), family history of gynecologic cancer (P=.04), high-perceived risk of endometrial cancer (P<.001), and the awareness of gynecologic cancer risk (P<.001). Neither educational level nor family risk classification had any association with the use of endometrial cancer screening. However, in multivariable analyses, only age between 45 and 54 years (odds ratio 2.8; P=.02) and the awareness of endometrial cancer risk (odds ratio 4.86; P<.001) were identified as significantly positively related to use of gynecologic screening (Table 4).
One-hundred fourteen women reported that they had not attended an endometrial cancer screening. The most frequent reasons were: “I have mainly been concerned about colorectal cancer” (41%) and “I had never heard that it was necessary to have gynecologic screening in my family” (35%).
We investigated the awareness of endometrial cancer risk and self-reported compliance with gynecologic screening among women with increased risk of gynecologic cancer in HNPCC. The question assessing women's awareness and perceived risk for cancer in our study was specific to endometrial cancer. To our knowledge, this is the first large study that describes women's long-term awareness of endometrial cancer in families with HNPCC and that identifies predictors of compliance with endometrial cancer screening. This is based on a systematic search of the literature in PubMed (latest: June 18, 2012). The search terms used were: “hereditary nonpolyposis colorectal neoplasms” or “lynch syndrome;” AND “endometrial neoplasms” or “endometrial cancer” and “risk;” AND “endometrial cancer screening” or “endometrial cancer surveillance;” AND “knowledge” or “awareness,” and included all languages. Almost two-thirds of the women reported that they were aware of an increased risk of endometrial cancer and attended at endometrial cancer screening. More than half of the participants perceived their risk for development of endometrial cancer as higher than average.
Our rate of compliance with endometrial cancer screening was comparable with, if not better than, those of studies reporting the use of endometrial cancer screening after genetic counseling and testing.11–14 However, this study cohort included both women who had received genetic counseling in a genetics clinic and those who had been informed about the syndrome by letter from the HNPCC register or by their relatives.
The awareness of endometrial cancer risk was the main predictor of adherence to endometrial cancer screening in multivariable regression analyses. In addition, women between 45 and 54 years of age reported attending screening almost three-times more often. One explanation could be that women in this age group approaching menopause are more concerned about their heredity cancer risk. However, once awareness was entered into the logistic regression, the genetic counseling, perceived risk, and gynecologic cancer among close relatives were not significantly associated with the compliance, probably because of the high correlation between these variables and awareness of cancer risk. In other words, a person's awareness of cancer risk is dependent of many factors, such as age, education, family risk classification, experience of cancer (personal or in the family), and genetic counseling. Therefore, “awareness” will be a strong intermediate factor between these variables and the compliance. Hence, after adjusting for these variables in multivariable analyses, “awareness” will obscure the effect of the other factors. Nevertheless, our findings are consistent with a meta-analysis review by Katapodi et al,17 who note that perceived risk is weakly influenced by age and has a small but significant effect on adherence to mammography screening. Family risk classification and educational level did not show any relation to the compliance either in the univariable or in the multivariable analyses. After adjusting for the variables of interest, the awareness of cancer risk was significantly associated with education, genetic counseling, gynecologic cancer in the family, and the high perceived risk of endometrial cancer, in line with other studies.11,13
Hadley et al11 reported that use of endometrial cancer screening was significantly associated with women's perceived likelihood of being a mutation carrier and with sharing results of genetic testing with their physicians, and concluded that sharing the test results with the physicians facilitates the women's objectivity of their cancer risk. Our study demonstrated a higher rate of awareness of cancer risk and compliance with screening. However, 35% of the women were unaware of their elevated risk, despite an organized national systematic attempt to educate these women regarding their increased risk of endometrial cancer. This supports the need for better education of HNPCC family members and the physicians to improve the awareness of endometrial cancer risk related to Lynch syndrome.18
In the only study of awareness of gynecologic surveillance, which included 27 women, the authors concluded that if the gynecologists are the source of information about the gynecologic cancer risk, then these women presumably will be more aware of the gynecologic surveillance.12 Our findings, based on a much larger group, substantiate the importance of personal information of gynecologic cancer risk, thereby improving the awareness of and compliance with gynecologic screening. The participants in our study are derived from families with HNPCC, including Lynch families, Amsterdam-positive families, and Amsterdam-like families; hence, our findings most likely represent all family members with increased risk for Lynch syndrome--related endometrial cancer. The predictors of compliance with screening in our study correspond with findings from other studies of cancer screening practices in healthy women and women from families with hereditary breast and ovarian cancers. Age has been identified as a significant factor in screening behavior after genetic counseling and testing for BRCA 1 or 2.19
Lijovic et al20 reported that women with a first-degree relative with breast cancer had smaller, earlier-stage cancers at diagnosis, and they concluded that it might reflect more diligent use of breast cancer screening among women who considered themselves at increased risk for development of the disease. Another study by Isaacs21 reported a 12-times higher use of ovarian cancer screening among women with at least one relative with ovarian cancer. These findings are consistent with our data, supporting the idea that the correlation between awareness of cancer risk and uptake of recommended screening could be generalized to a variety of hereditary cancer syndromes.
The relatively high response rate is the main strength of this study. Denmark has many national registries with a high validity of personal identities, cancer diagnoses, and demographic data, which in combination with our active strategy to identify and contact persons at risk is the other strength of our study. However, the study design with questionnaires implies a risk of selection bias and recall bias, eg, that women who are aware of their increased risk for cancer are perhaps more likely to complete the study questionnaire and to recall their screening procedures. The frequency of a high level of knowledge therefore might be overestimated. These biases imply an underrepresentation of unaware women in the study group and a higher rate of compliance with the screening.
In conclusion, awareness of cancer risk is the prime predictor of compliance with recommended screening, indicating the importance of improvement of awareness of cancer risk in at-risk persons and their physicians. A substantial number of women at risk for endometrial cancer were not aware of their elevated cancer risk, supporting the need to educate the physicians and the family members about the Lynch syndrome--related endometrial cancer risk.
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© 2012 by The American College of Obstetricians and Gynecologists. Published by Wolters Kluwer Health, Inc. All rights reserved.
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