Screening adherence in BRCA1/2 families is associated with primary physicians' behavior

Abstract

This study provides an assessment of long-term breast and ovarian cancer screening behaviors and the variables associated with adherence with screening among women with or at 50% for having a BRCA1/2 mutation. Participants in the study included 112 women (33 mutation carriers and 79 at 50% risk). Data was collected through a mailed questionnaire, which included items to assess screening behaviors in the last 2 years, risk perception, cancer specific distress, adherence determinants, specific barriers, and cancer history. Statistical analysis included descriptive statistics and non-parametric tests to describe bivariate associations and regression analysis. Adherence rates were 72% for annual mammography, 21% for semi-annual clinical breast exam (CBE), 29% for monthly breast self-exam (BSE), and 19% for annual transvaginal ultrasound (US). Only one participant was adherent with semi-annual CA125. Variables that had a significant association (P < 0.05) with at least one screening modality included: a lack of time, marital status, education, cancer history, provider concern, perceived screening utility, confidence in ability to overcome barriers, cancer specific distress, and risk perception. Primary physician behavior, either in terms of screening recommendations or screening performance in the case of CBE, had significant independent association with adherence to mammography, CBE, and US screening recommendations. The results of this study highlight the essential role that primary physicians play in supporting their very high-risk patients' adherence.

Patient compliance based on genetic medicine: a literature review

“…In all cases, carriers were more adherent than participants who had a 50 % risk, but this was only statistically significant for clinical breast exam. This study also emphasized the findings by Loescher et al (2009), that primary physician behavior had a significant independent association with adherence to mammography, clinical breast exam and ultrasound screening recommendations (Tinley et al 2004). Kinney et al (2006) included 40 women (African Americans, 10 % of whom were affected by breast/ovarian cancer) with 10 being carriers for BRCA1 mutations and 30 were noncarriers.…”

“…Several studies identified the "physician recommendation" as one of the most important factors in the patient's process of decision making about screening behavior (Hadley et al 2004;Kinney et al 2007;Tinley et al 2004;Lerman et al 1990;Geiger et al 2008). Burton et al (2010) concluded that genetic counseling offers a promising avenue for education and risk behavior reduction in persons at increased risk for cancer due to a familial or genetic predisposition and a teachable moment to introduce lifestyle modifications.…”

“…Most of the studies concerning cancer screening after genetic testing for BRCA1/2 mutations report an increase in screening behavior, especially in carriers posttesting (Schwartz et al 2003;Lynch et al 2006;Foster et al 2007;Claes et al 2005b). In contrast to studies on HNPCC, the difference was not always significant (Scheuer et al 2002;Tinley et al 2004). Study conclusions on BRCA1/2 testing are not as clear and defined.…”

“…No participants had a mastectomy within 2 years, but 46 % of carriers underwent oophorectomy. Tinley et al (2004) evaluated 112 returned questionnaires (33 mutation carriers and 79 at 50 % risk of being a carrier). Those women reported about their gynecological cancer screening behavior in the last 2 years.…”

How do women at increased, but unexplained, familial risk of breast cancer perceive and manage their risk? A qualitative interview study

“…This type of research has measured the accuracy of perceived risk, compared to an 'objective' risk estimate, and has found that many women either under- or over-estimate their risk [13-19]. Much of the research on risk perception has focused on women who attend a clinical genetics service [2,15,16,20-22] and/or women who know they carry a BRCA1 or BRCA2 mutation [23]. Two meta analyses of the effect of genetic counselling on risk perception have reported conflicting findings; one reported an increase in accuracy of risk perception due to counselling [24], while the other reported no effect [25].…”