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1.
Graves KD Christopher J Harrison TM Peshkin BN Isaacs C Sheppard VB 《Journal of genetic counseling》2011,20(6):674-689
We examined healthcare providers’ perceptions of genetic counseling and testing in African American women at moderate to high-risk
of carrying a BRCA1/2 mutation. We conducted 20 in-depth interviews with genetic counselors (n = 5), medical oncologists (n = 8), obstetrician/gynecologists (n = 2) and surgeons (n = 5). Interviews were audiotaped, transcribed and independently coded by two individuals using a content analysis approach.
Seven themes emerged relevant to providers’ perceptions of African American women’s use of BRCA1/2 genetic services: access factors, cultural beliefs and preferences, effects of testing, patient motivators for genetic counseling
and testing, patient-provider communication, reasons for provider referral, and reasons for patient refusal. Providers identified
individual- and system-level barriers to African American women’s use of genetic services, including lack of follow-up after
referrals to genetic specialists and challenges to obtaining financial coverage for under- and uninsured high-risk women.
Results have implications for physician and patient education regarding appropriate referrals to and uptake of genetic services
in at-risk African American women. 相似文献
2.
Detailed family history is a critical element of cancer risk assessment. The relative importance of pancreatic cancer (PC)
in a close family member, particularly in hereditary breast-ovarian syndrome (HBOS), is not clearly defined. We use a case-control
design to investigate the importance of a family history of PC to cancer risk assessment. Case and control families were identified
from the University of Chicago Cancer Risk database (1994–2005). Pedigrees were analyzed for personal and familial clinical
cancer data. Cases included all new subjects (probands) reporting a close relative (first or second degree) with PC. Controls
included the probands enrolled in the database immediately prior to and subsequent to each case (i.e. two controls for each
case). From 1,231 pedigrees, 103 PC were reported by the proband in 87 unique families. Many probands reported multiple or
early-onset PCs: one third (28/87) of case families met criteria for a familial PC syndrome [≥2 first-degree relatives with
PC (n = 10) or PC diagnosed ≤50 (n = 18)]. Of these families, the majority (75%) concurrently met criteria suggestive of hereditary breast-ovarian syndrome
(HBOS). Because of a family history consistent with HBOS, at least one individual from each of 29 case and 55 control families
underwent genetic testing for BRCA1/2. Among case families, 19 of 29 (66%) had a BRCA1/2 mutation compared with 16 of 55 (29%) controls. A significant association between family history of PC and a BRCA1/2 mutation was seen (OR 3.78, 1.32–10.9). This point estimate was strengthened but less precise in the non-Ashkenazi Jewish
subset of tested families (OR 6.03, 1.68–22.14). In a high-risk population, a family history of PC, though infrequently reported,
is nonetheless clinically meaningful. In risk assessment for HBOS, identifying a family history of PC should strongly raise
the suspicion of an unrecognized BRCA1/2 mutation. 相似文献
3.
Katarina M. Sussner Lina Jandorf Hayley S. Thompson Heiddis B. Valdimarsdottir 《Journal of genetic counseling》2010,19(3):255-268
Background: Latinas are less likely to use genetic services (counseling and testing) for hereditary breast and/or ovarian cancer risk
compared to other ethnic groups. Meanwhile, little is known about barriers to genetic counseling among Latinas at increased
risk of inherited breast cancer. Methods: A two-phase pilot study was conducted to examine interest, barriers and beliefs about BRCA genetic counseling among at-risk
Latinas in New York City and explore the potential for developing a culturally-tailored narrative educational tool for use
in future studies. Phase 1 included quantitative telephone interviews (N = 15) with bilingual participants with a personal diagnosis at a young age and/or family history of breast and/or ovarian
cancer. Quantitative results informed development of a narrative prototype educational presentation viewed by a subset of
participants (N = 10) in Phase 2 focus groups. Results: Despite barriers, including lack of awareness/knowledge, concerns related to learning cancer risks of family members, and
concerns about cost/health insurance, participants reported positive attitudes, beliefs and interest in learning about BRCA
genetic counseling. Further, significant increases in knowledge were demonstrated from pre-post presentation (p = 0.04). Conclusion: There is an unmet need to educate at-risk Latinas about BRCA genetic counseling. Culturally-tailored educational materials
including narratives may increase knowledge about BRCA genetic counseling among this underserved group. The effectiveness
of these approaches should be tested in future research with larger samples. 相似文献
4.
McCuaig JM Greenwood CM Shuman C Chitayat D Murphy KJ Rosen B Armel SR 《Journal of genetic counseling》2011,20(5):442-449
Five to 10% of all cases of breast and ovarian cancer are attributed to a heritable genetic predisposition. Transmission of
BRCA1 and BRCA2 mutations is equally likely through maternal or paternal lineage; however, fewer referrals to cancer genetics clinics appear
to be made for a paternal, than maternal, family history of breast and/or ovarian cancer. To examine this potential bias,
a retrospective review of 315 patient and family charts was conducted by one familial cancer clinic in Toronto, Canada. Referral
letters, risk estimates, and family histories were analyzed to identify significant differences between patients referred
with maternal and paternal family histories. It was determined that patients are approximately five times more likely to be
referred with a maternal family history of breast and/or ovarian cancer as compared to those with a paternal family history
(p = <.0001). Individuals with a paternal family history were found to have a different, and higher, pattern of risk estimates
(p = .00064). No significant difference was seen between the type of referrals sent by general practitioners, oncologists, and
gynecologists. Recommendations to increase the awareness of paternal family history in assessing cancer risk are provided. 相似文献
5.
Melissa Fuller Melanie Myers Thomas Webb Meredith Tabangin Cynthia Prows 《Journal of genetic counseling》2010,19(1):84-96
Family health history is one of the best predictors of an individual’s risk for common disease, yet it is underutilized in
routine care. Although the Surgeon General has recommended consumers record their family health history and share it with
their health care provider, providers’ perceptions of patient-generated family histories are unknown. To learn more about
providers’ experience with and perceptions about patient-generated family histories, we mailed surveys to 301 providers and
had a response rate of 24% (n = 68). Seventy-three percent felt a patient-generated computer pedigree would improve their ability to assess risk as compared
to their current methods. Seventy percent felt a patient-generated computer pedigree would either have no effect on or would
increase the number of patients that could be seen in a day. Results suggest that providers appreciate the potential benefits
of patient-generated family histories. Genetic counselors and nurses are in a prime position to promote and facilitate the
use of patient-generated family health histories in routine care. 相似文献
6.
Perceived risk is a complex concept that influences the genetic counseling process and can affect client coping and behavior.
Although the association between family history and risk perception is well recognized in the literature, no studies have
explored this relationship specifically in those seeking genetic susceptibility testing for a common chronic condition. REVEAL
is a randomized trial assessing the impact of APOE disclosure and genetic risk assessment for Alzheimer’s disease (AD). Using
baseline REVEAL data, we hypothesized that there would be a significant association between the degree of AD family history
and risk perception of AD, and that this relationship would be stronger in those who believed that genetics is a very important
AD risk factor. In our sample of 293 participants, we found that a higher self-perceived risk of AD was associated with strength
of family history of AD (p < 0.001), belief in genetics as an important AD risk factor (p < 0.001), being female (p < 0.001) and being Caucasian (p = 0.02). These results are the first to demonstrate the association between family history and risk perception in persons
volunteering for genetic susceptibility testing for a common complex disease. 相似文献
7.
Gammon AD Rothwell E Simmons R Lowery JT Ballinger L Hill DA Boucher KM Kinney AY 《Journal of genetic counseling》2011,20(6):625-638
This study was an investigation of awareness, cognitions, and psychosocial and educational needs related to genetic counseling
and testing among Latinas and non-Latina whites at increased risk for having a BRCA1/2 mutation. Sixty-three Latina and eighty-four non-Latina white women completed telephone surveys employing a mixture of quantitative
and qualitative questions assessing awareness, benefits, risks, barriers, and genetic counseling communication preferences
regarding BRCA1/2 testing. Among participants who had not previously had genetic counseling/testing, 56.9% of Latinas (29/51) and 34.8% of
non-Latina white participants (24/69) were unaware of the availability of BRCA1/2 testing. In multivariate logistic regression analysis, Latina ethnicity was the only statistically significant independent
factor associated with lack of awareness (OR = 0.42; 95% CI = 0.19–0.35). No appreciable differences were noted between ethnic
groups regarding perceived benefits of BRCA1/2 testing or desired genetic counseling topics. These findings underscore the importance of increasing awareness of cancer
genetic counseling and genetic testing among both Latina and non-Latina white populations. 相似文献
8.
The study assessed perceptions of breast cancer genetic counseling. Focus groups were conducted with twenty women (ages < = 50 years)
in a Midwestern, urban health system identified as at above average risk of developing hereditary breast cancer and referred
for breast cancer genetic counseling following mammography. All participants associated the words “breast cancer” with fear.
African American women who received breast cancer genetic counseling may have channeled their fear into increased vigilance
related to breast health. African American women who did not receive breast cancer genetic counseling were most knowledgeable
about it. In contrast, Caucasian women who did not receive it reported uncertainty about the role of genetic counseling and
testing in assessing breast cancer risk, mistrust in medical professionals, and lack of trust in the accuracy of genetic tests.
The results could be used to help develop interventions to improve informed decision-making regarding breast cancer genetic
counseling. 相似文献
9.
Akinleye I Roberts JS Royal CD Linnenbringer E Obisesan TO Fasaye GA Green RC 《Journal of genetic counseling》2011,20(6):650-659
Genetic susceptibility testing for common diseases is expanding, but little is known about race group differences in test
perceptions. The purpose of this study was to examine differences between African Americans and Whites in knowledge, attitudes,
and motivations regarding genetic susceptibility testing for Alzheimer’s disease (AD). Before enrolling in an AD genetic testing
research trial, 313 first-degree relatives of AD patients (20% African American; 71% female; mean age = 58 years) were surveyed
regarding: (1) knowledge about genetics and AD risk; (2) concerns about developing AD; and (3) reasons for seeking testing.
In comparison to Whites, African Americans were less knowledgeable about genetics and AD risk (p < .01) and less concerned about developing AD (p < .05), with lower levels of perceived disease risk (p = .04). The results suggest that African Americans and Whites differ notably in their knowledge, beliefs, and attitudes regarding
genetic testing for AD. Additional research with more representative samples is needed to better understand these differences. 相似文献
10.
Family history questionnaires (FHQ) are useful tools for cancer genetic counseling, providing an informational basis for pedigree
construction and individualized cancer risk assessment. Reported return rates of mailed FHQs amongst familial cancer clinics
that utilize them are lower than desired however, and it is unknown whether patients perceive required completion of a FHQ
as a barrier to access of cancer genetics services. This study critically evaluated the use of a mailed FHQ for all routine
new patient referrals to a single hereditary cancer clinic in Quebec, Canada. Reasons for response/non-response to a FHQ and
the effect of administration of a questionnaire on patients’ self-reported level of motivation to pursue genetic counseling,
were examined. Of 112 eligible individuals referred during the study period, 86 completed a semi-structured telephone survey;
of these, 45% had returned the mailed FHQ prior to the telephone survey (Responders) and 55% had not (Non-responders). Overall,
the majority of participants indicated a FHQ is an acceptable and understandable method of collecting family history information.
Most prevalent reasons for not returning the FHQ were (bad) timing (56%), and difficulty accessing family history information
(46%). Non-response was significantly associated with difficulty in asking relatives for the requested information (p = 0.011), and Non-responders cited fewer overall perceived benefits of cancer genetic counseling as compared with Responders
(p < 0.0001). One quarter of Non-responders returned the mailed FHQ following administration of the telephone survey, suggesting
implementation of a follow-up prompt is a cost-effective way to increase response. 相似文献
11.
Addressing women's breast cancer risk and perceptions of control in medical settings 总被引:1,自引:0,他引:1
Renee Royak-Schaler Brian Cheuvront Kenneth R. Wilson Claudia M. Williams 《Journal of clinical psychology in medical settings》1996,3(3):185-199
Many women with family histories of breast cancer deal with two distinct but related issues: their objective physical risk and the emotions this risk engenders. Studies indicate that approximately 70% of African American and white women are concerned about their chances of developing breast cancer someday and perceive themselves to be at risk. Health care providers, including psychologists, need to be aware of the special needs and psychosocial concerns of high-risk women with family histories of breast cancer, since perceptions of breast cancer risk influence screening practices. Providers need training in understanding the significance of specific family patterns of breast cancer, screening guidelines appropriate for women at risk, and the benefits and risks of available prevention options, including genetic screening. Delivering accurate information about both established risk factors known to elevate personal risk, such as age and family history, and factors which women associate with breast cancer, such as bumping and bruising a breast, smoking, and oral contraceptive use, is essential for promoting accurate risk perceptions and appropriate screening schedules. 相似文献
12.
Alcohol use and its associated problems among university students have attracted empirical investigation by researchers and
scholars. While many of these studies have reported a very high level of alcohol consumption and highlighted the various problems
this portends, alcohol-related perceptions of this vulnerable population, which could be germane to intervention aimed at
curtailing the problem, have remained largely under-researched. This cross-sectional survey examined the use and perceptions
of alcohol by student-patrons (n = 1,705) of beer parlours or ‘joints’ in three university communities in Southwest Nigeria. Respondents were interviewed
using AUDIT, a socio-demographic prototype and an open-ended section on alcohol-related perceptions of the students. Findings
indicated that overall, 72% of the respondents perceived that alcohol is good for socializing, 68% perceived that alcohol
is good in the aspect of stress reduction, 58% believed that alcohol consumption is indicative of maturity, 36% perceived
that alcohol enhances their sexual performance while 39% perceived that alcohol serves to enhance alertness/concentration.
Results also showed that gender (β = −. 23; p < .05), paternal alcohol use (β = .36; p < .01), parental socio-economic status (β = .33; p < .01), and residential status of university of respondents (β = .21; p < .05) significantly predicted alcohol use. The study concluded that perceptions about alcohol are very germane to understanding
students’ alcohol use and should be reckoned with in designing intervention programmes. The need to adopt a ‘client-centered’
approach to the problem of student drinking behaviour was emphasized. 相似文献
13.
Susan T. Vadaparampil Jessica McIntyre Gwendolyn P. Quinn 《Journal of genetic counseling》2010,19(6):618-629
This study explored awareness of risk factors for hereditary breast and ovarian cancer (HBOC), awareness, knowledge and concerns
about genetic testing, and preference for how to have genetic testing recommended by a care provider among at-risk Hispanic
women. Differences in these factors among Mexican, Cuban, and Puerto Rican women were also examined. Women with a personal
or family history of breast or ovarian cancer from the Tampa Bay Area participated in a qualitative interview (N = 53). Data were analyzed using a combination of open and axial coding with a grounded theory approach. Study participants
in all groups reported: being aware that family history was a breast cancer risk factor, limited knowledge of genetic testing,
fear of test results, concerns about children’s risks, and no physician referral for genetic testing. Noteworthy sub-ethnic
differences included preferences for physician recommendation and information about genetic testing. This study provides important
preliminary information about areas related to HBOC that require additional education in the Hispanic community as a whole
and by sub-ethnicity. 相似文献
14.
Julia Fehniger Feng Lin Mary S. Beattie Galen Joseph Celia Kaplan 《Journal of genetic counseling》2013,22(5):603-612
Previous studies examining communication of BRCA1/2 results with relatives and family uptake of BRCA1/2 testing have sampled from predominantly white, high SES cohorts ascertained solely from tertiary care centers. No studies have focused on family communication and testing among relatives of diverse BRCA1/2 carriers. We conducted structured interviews with 73 BRCA1/2 carriers identified at a public hospital and a tertiary cancer center. We asked participants if each first- and second-degree relative was aware of their BRCA1/2 results and whether or not each relative had tested. Generalized estimating equations identified rates and predictors of family communication and testing. Participants disclosed their test results to 73 % of 606 eligible relatives and 31 % of 514 eligible relatives tested. Communication and testing rates were similar for relatives of participants from the public hospital and the tertiary cancer center. Hospital site was not a significant predictor of either result disclosure or relative uptake of testing. African American and Asian/Pacific Islander participants were significantly less likely to disclose their results to their relatives; relatives of African American participants were significantly less likely to test. Addressing these disparities will require further research into the best ways to facilitate family communication and counsel at-risk relatives of racially and socioeconomically diverse BRCA1/2 mutation carriers. 相似文献
15.
Armel SR Hitchman K Millar K Zahavich L Demsky R Murphy J Rosen B 《Journal of genetic counseling》2011,20(4):355-364
The use of mailed family history questionnaires (FHQs) has previously been established to be an effective method for obtaining
family history information for the triage of patients for genetic counseling and genetic testing of hereditary breast and
ovarian cancer syndrome; yet only 53% of patients complete their FHQ within 6 months from the date of mailing (Armel et al.
Journal of Genetic Counseling, 18(4):366–378, 2009). Although literature exists evaluating why women may not attend genetic counseling, no data are currently available examining
genetic risk or genetic testing eligibility in the population of patients not returning their FHQ (non-responders). Concern
exists that if non-responders are not followed-up for the purpose of triage for genetic counseling, individuals at high-risk
for a hereditary cancer syndrome may be missed. This article explores the demographics of the non-responder population to
assess genetic risk estimates for mutations in the BRCA1 and BRCA2 genes and genetic testing eligibility as compared to a responder population of patients who completed a mailed FHQ. A total
of 430 pedigrees were obtained, 215 from non-responders and 215 from responders. Results of this study indicate that 69% of
non-responders were either unreachable by telephone (42%), declined an appointment (19%), or were previously seen in another
center for a genetic counseling visit (8%). Additionally, results indicate that non-responders are less likely to be eligible
for genetic testing (40%) as compared to responders (57%) (p = 0.0004). Together these data shed light on a population of patients for which limited information exists and suggest that
we question how and to what extent clinics should pursue non-responders, particularly in light of global reductions in health
care funding. 相似文献
16.
Marilyn Stern Suzanne E. Mazzeo Jerlym Porter Clarice Gerke Daphne Bryan Joseph Laver 《Journal of clinical psychology in medical settings》2006,13(3):217-228
Two studies investigated overweight in African American girls. First, African American adolescent girls (BMI was ≥ 85th percentile) and their mothers participated in focus groups addressing weight and eating. Although mothers and daughters shared some similar views on these issues, there were important discrepancies, with mothers expressing greater doubt about the potential success of a healthy weight program. The second study evaluated baseline data from 39 African American girls participating in a weight management program; mothers' reports were also analyzed. In both studies, adolescents reported significant teasing, and in the second study, teasing was inversely associated with social quality of life (β=.55, t=3.01, p=.007). Motivation to participate was positively associated with teasing (r=.50, p < .01). Self-esteem was inversely related to positive health habits (all p < .05). Mothers who viewed their daughters as having higher self-esteem were less concerned about their daughters' weight. Differences in mothers' and daughters' perceptions highlight the importance of a family approach in pediatric overweight interventions. Results provide evidence that overweight African American girls face significant weight stigmatization and suggest areas to target regarding intervention implementation.
相似文献
Marilyn SternEmail: |
17.
William M.P. Klein Isaac M. Lipkus Sarah M. Scholl Amy McQueen Jennifer L. Cerully Peter R. Harris 《Psychology & health》2013,28(10):1195-1208
We examined whether self-affirmation would facilitate intentions to engage in colorectal cancer (CRC) screening among individuals who were off-schedule for CRC screening and who were categorised as unrealistically optimistic, realistic or unrealistically pessimistic about their CRC risk. All participants received tailored risk feedback; in addition, one group received threatening social comparison information regarding their risk factors, a second received this information after a self-affirmation exercise and a third was a no-treatment control. When participants were unrealistically optimistic about their CRC risk (determined by comparing their perceived comparative risk to calculations from a risk algorithm), they expressed greater interest in screening if they were self-affirmed (relative to controls). Non-affirmed unrealistic optimists expressed lower interest relative to controls, suggesting that they were responding defensively. Realistic participants and unrealistically pessimistic participants who were self-affirmed expressed relatively less interest in CRC screening, suggesting that self-affirmation can be helpful or hurtful depending on the accuracy of one's risk perceptions. 相似文献
18.
Tamara J. Somers Julie C. Michael William M. P. Klein Andrew Baum 《Journal of genetic counseling》2009,18(4):339-349
Women with a limited family history of breast cancer may be interested in cancer genetics information although their objective
risk of breast cancer may not indicate routine referral to cancer genetics services. This study examined factors related to
interest and use of cancer genetics services in a community sample of women with a limited family history of breast cancer
(N = 187) who had no previous contact with cancer genetics services. Participants provided demographic information and ratings of perceived risk,
cancer distress, attitudes, and intentions to initiate cancer genetics services. Participants were given information about
a cancer genetics clinic that served women having concerns about their breast cancer risk. Women were contacted within 6 weeks
and 8 months following their study appointment. Six weeks following their study appointment, 25% of women had initiated cancer
genetics services. Eight months following their study appointment, 18% of women reported having completed a cancer genetics
service appointment. Baseline intentions independently predicted both initiation at 6 weeks and appointment at 8 months. Cancer
distress was positively associated with cancer genetics service initiation and appointment. Results suggest that some women
with a limited family history of breast cancer are interested in seeking out cancer genetics information. Women with a limited
family history of breast cancer may benefit from the availability of cancer genetics information provided through primary
healthcare settings. 相似文献
19.
Julie Lapointe Claudia Côté Karine Bouchard Béatrice Godard Jacques Simard Michel Dorval 《Journal of genetic counseling》2013,22(2):249-257
We assessed whether certain life events contributed to the communication about cancer risk within families who have undergone BRCA1/2 testing. We also explored what type of resources participants would have valued to help in supporting family communication about genetic information. Two hundred and forty-six individuals (218 women, 28 men) who received a BRCA1/2 genetic test result 3 to 10 years earlier (mean of 6.4 years) participated in a telephone interview. Participants were asked about the occurrence of a number of life events (cancer diagnosis, death, uptake of prophylactic surgery, and providing care to a family member with cancer) in their family since their BRCA1/2 test result disclosure and, for each occurrence, whether it fostered family communication about cancer risk. A total of 182 participants (74 %) reported that they or one of their relatives received a cancer diagnosis, 176 (72 %) reported that someone died in their family, and 73 (30 %) stated that they or one of their relatives undertook a prophylactic surgery. During this period, 109 participants (44 %) also provided care for a family member who had cancer. Among participants who reported these life events, family communication was fostered by these events in proportions varying from 50 % (death) to 69 % (cancer diagnosis). Our results indicate that life events may contribute to family communication about cancer risk. Further research is needed to determine whether these events provide a “window of opportunity” to reach family members, address their needs and concerns about cancer, update family cancer history, and introduce genetic counseling and risk assessment. 相似文献