Barbara Bernhardt - Academia.edu (original) (raw)

Papers by Barbara Bernhardt

Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology, 1999

We offered education, counseling, and family-based BRCA1/2 testing to women at increased risk of ... more We offered education, counseling, and family-based BRCA1/2 testing to women at increased risk of breast cancer and assessed (a) their reasons for participating and (b) whether source of recruitment, desire to help research (altruism), and the need to communicate with their affected relative about testing distinguish those who did and those who did not complete each phase of our protocol. We sent invitations to 403 women who had completed a questionnaire on BRCA1/2 testing, 178 of whom were considered high risk because they had more than one relative on the same side of the family with early-onset breast cancer. Among the 132 high-risk respondents from the mid-Atlantic states (where testing was offered), 36% (n = 47) were interested in counseling. Those who actually attended counseling were more likely to have some college education, a higher perceived risk of breast cancer, and a greater fear of stigma and were less likely to have a daughter than those who did not attend. The reason...

Genetic Testing, 2001

The 1997 National Institutes of Health (NIH) Consensus Conference on Cystic Fibrosis (CF) testing... more The 1997 National Institutes of Health (NIH) Consensus Conference on Cystic Fibrosis (CF) testing recommended that carrier screening be offered to all pregnant women and couples planning a pregnancy. We surveyed 492 Maryland Ob-Gyns before and after the consensus conference to: (1) assess whether obstetricians changed their practice regarding CF carrier testing, and (2) identify the factors associated with changing practice patterns, including awareness of the statement, and knowledge about CF. Fifty-six percent (275) responded to the first mail questionnaire and 107 obstetricians responded to both questionnaires. In 1998, only 18% of respondents to the second questionnaire were familiar with the NIH statement, but 43% reported discussing testing with patients with no family history, a significant increase from 1997, when only 20% reported discussing testing. Less than one-third correctly answered six multiple-choice knowledge questions about CF and carrier testing. In multivariate analysis, knowledge and familiarity with the NIH consensus statement were not associated with beginning to discuss CF carrier testing after the CF conference with their patients without a family history.

Obstetrics & Gynecology, 1999

American Journal of Medical Genetics Part A, 2015

Journal of women's health & gender-based medicine, 2000

More information is needed about the relative effectiveness of prophylactic surgery, chemoprevent... more More information is needed about the relative effectiveness of prophylactic surgery, chemoprevention, and surveillance in reducing breast and ovarian cancer risk in women with an inherited susceptibility mutation. We assessed practical and ethical barriers to conducting randomized clinical trials (RCTs) to compare preventive interventions for breast and ovarian cancer. Eighty-seven at-risk women who attended an education and counseling session about BRCA1/2 testing were asked about their willingness to participate in hypothetical research studies for breast and ovarian cancer risk reduction. In addition, 247 Maryland physicians from five specialties completed a mail survey including a question about their likelihood of recommending RCT participation to an at-risk woman. Nineteen percent of at-risk women reported willingness to participate in a hypothetical RCT for breast cancer risk reduction and 17% for ovarian cancer risk reduction. Women with children and women likely to have a p...

Obstetrics and gynecology, 1998

To document the content and accuracy of discussions about prenatal genetic testing between obstet... more To document the content and accuracy of discussions about prenatal genetic testing between obstetric providers and pregnant women. The first prenatal visits of 169 pregnant women with 21 obstetricians and 19 certified nurse-midwives were audiotaped and analyzed for whether a discussion of family history or genetic testing took place and if so, its length, content, and accuracy. Family history was discussed in 60% of visits, maternal serum marker screening in 60%, second-trimester ultrasonography for fetal anomalies in 34%, and for women at least 35 years old, amniocentesis or chorionic villus sampling (CVS) in 98%. The length of discussions of genetic testing averaged 2.5 minutes for women younger than 35 years of age and 6.9 minutes for older women. Topics discussed most often were the practical details of testing, the purpose of testing, and the fact that testing is voluntary. Discussions seldom were comprehensive. Obstetricians were more likely to make a recommendation about test...

Science Communication, 2003

Personalized Medicine, 2012

Despite predictions of increased clinical applications, little is known about primary care provid... more Despite predictions of increased clinical applications, little is known about primary care providers' (PCPs') readiness to apply genomics to patient care. The aim was to assess PCPs' current experience with genetic testing, their assessment of the understandability and clinical utility of information in sample direct-to-consumer reports for genomic assessment of disease risk and warfarin dosing and attitudes toward genomic medicine. A web-based survey of PCPs who are members of Knowledge Networks' Physician Consulting Network was conducted. Of the 502 respondents (23.3% response rate), most ordered genetic tests infrequently. When presented with the direct-to-consumer genomic testing reports, most believed the reports were understandable, and would be willing to review results with a patient, and many believed the results would be helpful in patient management. Despite limited experience with genetic tests, PCPs are open to helping patients understand genomic information. However, additional physician education is needed.

Social Science & Medicine, 2003

After the announcement that sequencing of the human genome was nearly complete, media coverage wa... more After the announcement that sequencing of the human genome was nearly complete, media coverage was extensive. In light of ample evidence that the media are a primary source of health and science information, even for health professionals, media portrayals are often inaccurate or misleading, and discoveries that emanate from sequencing the human genome are likely to influence future health care, it is important to assess physicians' interpretations of media coverage about the human genome announcement. This paper describes the reactions of a sample of new physicians in the United States to this announcement, as well as the content of the stories they read or heard. Semi-structured surveys were distributed to all incoming houseofficers during Orientation at one major academic medical center. Eighty-one percent of 190 houseofficers returned a survey; 123 completed surveys were analyzed. Fifty-four percent of respondents thought the media message was only positive and 21% thought it was negative or mixed. Participants who reported radio as their media source were less likely to recall positive messages (p<0.05). Sixty-five percent and 76%, respectively, had positive perceptions of the impact of the accomplishment on people and on the medical profession. Overall, 48% were enthusiastic and 52% were guarded about the accomplishment. Enthusiasm was related to being an adult primary care houseofficer (p=0.07) or to having heard about it on television or in the newspaper (p<0.05). Of the 36 stories analyzed, newspaper and television reports focused more on medical implications and radio reports focused more on ethical issues. The degree of enthusiasm about the accomplishment reflects the content of the media coverage, and, at least for adult primary care houseofficers, probably reflects the increasing relevance of genetic discoveries to medical practice. Since physicians obtain much of their health and science information from the media, they can play an instrumental role in helping their patients interpret media coverage of advances in genetics and their impact on health care. However, this will require that physicians develop an appreciation of the newsmaking process, and how subtle interactions between politics, the media and science influence the "framing" of media coverage.

Community Genetics, 1998

... Nonrespondents were mailed postcard reminders 1 week after the original mailing. Questionnair... more ... Nonrespondents were mailed postcard reminders 1 week after the original mailing. Questionnaires mailed to physicians were accompanied by a 10-dollar incentive to respond. Physicians received postcard reminders a few days after the first mailing. ...

Obstetrics & Gynecology, 1999

To describe patient-obstetrician communication during the first prenatal visit and its relationsh... more To describe patient-obstetrician communication during the first prenatal visit and its relationship to physician gender and patient satisfaction. The first prenatal visit of 87 women with 21 obstetricians (11 male and ten female) was audiotaped and analyzed using the Roter Interaction Analysis System. Patient satisfaction was measured by postvisit questionnaire. Communication during first prenatal visits was largely biomedical, with little psychosocial or social discussion. Male physicians conducted longer visits than females (26 minutes versus 21.9 minutes, P < .05) and engaged in more facilitative communication (ie, making sure they were understood and providing direction and orientation) and explicit statements of concern and partnership (z > 1.96, P < .05). Female physicians devoted more communication to agreements, disagreements, and laughter than males (z > 1.96, P < .05). Satisfaction with physicians' emotional responsiveness and informational partnership was related to female physician gender and a variety of task-focused and affective communication variables. Communication and satisfaction between women and obstetricians during initial prenatal visits is related to physician gender and patient satisfaction. Male physicians conducted longer visits but women were more satisfied with female physicians.

The Journal of Law, Medicine & Ethics, 1993

ABSTRACT No abstract is available for this article.

Journal of Clinical Epidemiology, 2004

Journal of Adolescent Health, 2003

To better understand the process by which families at increased risk of disease would decide to e... more To better understand the process by which families at increased risk of disease would decide to enroll their children in genetic susceptibility research in order to develop recommendations regarding the informed consent process by which at-risk children are enrolled in such research in the future [corrected]. Parents and children (ages 10-17 years) from families at increased risk for heart disease (n = 21 dyads) or breast cancer (n = 16 dyads) participated in two face-to-face, audio-taped, semi-structured interviews: Initial interviews were conducted with parents and children separately, and follow-up family interviews were conducted 1 year later. Interview transcripts were coded based on common themes. Families vary in the stage at which, and degree to which, children would be involved in decision-making about research participation. In general, the older/more mature the child, the less risky the research and the more open the communication style, the greater the likelihood that decisions would be made jointly. Most children wanted some parental input, but still thought the final decision should be theirs. Most parents would want to make the initial decision about whether it would be reasonable to consider enrolling their child in the research being proposed, but none opposed the child having some time alone with the researcher. All parents and children in our study placed extreme importance on not forcing children to participate in nontherapeutic research if they do not want to. Decision-making about enrolling children in genetic susceptibility research should be based on an informed consent process that (a) gives parents and children sufficient opportunity to ask questions of the researcher(s) and to communicate with one another, and (b) gives children the opportunity to exercise their right to refuse participation without parental influence. This process should be tailored to the child's maturity level and style of communication in the family.

Genetics in Medicine, 2014

Genetics in Medicine, 2012

Hereditary hemorrhagic telangiectasia (HHT) is an autosomal dominant disorder of vascular develop... more Hereditary hemorrhagic telangiectasia (HHT) is an autosomal dominant disorder of vascular development resulting in direct connections between the arterial and venous systems, bypassing capillaries. Symptoms and signs can appear throughout life and marked intrafamilial variability confounds diagnosis based purely on clinical criteria. We set out to determine the impact of genetic testing on the cost of screening for HHT in at-risk relatives. We performed economic modeling of idealized pedigrees following two scenarios: repeated clinical screening until an HHT diagnosis could be either affirmed or excluded, and mutation testing in the proband, followed by genetic testing of at-risk relatives and clinical monitoring of only those relatives who test positive for the familial mutation. Based on actual reimbursement data from our region's largest health insurer, the molecular diagnostic model saved over 22,000forafamilywithfourrelativesatriskfortheinitialdiagnosticwork−up.Foracohortof100probands,thetotalsavingsforthemoleculardiagnosticmodeloverareasonableperiodoffollow−upwasgreaterthan22,000 for a family with four relatives at risk for the initial diagnostic work-up. For a cohort of 100 probands, the total savings for the molecular diagnostic model over a reasonable period of follow-up was greater than 22,000forafamilywithfourrelativesatriskfortheinitialdiagnosticwork−up.Foracohortof100probands,thetotalsavingsforthemoleculardiagnosticmodeloverareasonableperiodoffollow−upwasgreaterthan9 million. In this idealized setting in which all probands and at-risk relatives accepted molecular testing, the economic advantages of genetic screening over repeated clinical screening are substantial.

Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology, 1999

We offered education, counseling, and family-based BRCA1/2 testing to women at increased risk of ... more We offered education, counseling, and family-based BRCA1/2 testing to women at increased risk of breast cancer and assessed (a) their reasons for participating and (b) whether source of recruitment, desire to help research (altruism), and the need to communicate with their affected relative about testing distinguish those who did and those who did not complete each phase of our protocol. We sent invitations to 403 women who had completed a questionnaire on BRCA1/2 testing, 178 of whom were considered high risk because they had more than one relative on the same side of the family with early-onset breast cancer. Among the 132 high-risk respondents from the mid-Atlantic states (where testing was offered), 36% (n = 47) were interested in counseling. Those who actually attended counseling were more likely to have some college education, a higher perceived risk of breast cancer, and a greater fear of stigma and were less likely to have a daughter than those who did not attend. The reason...

Genetic Testing, 2001

The 1997 National Institutes of Health (NIH) Consensus Conference on Cystic Fibrosis (CF) testing... more The 1997 National Institutes of Health (NIH) Consensus Conference on Cystic Fibrosis (CF) testing recommended that carrier screening be offered to all pregnant women and couples planning a pregnancy. We surveyed 492 Maryland Ob-Gyns before and after the consensus conference to: (1) assess whether obstetricians changed their practice regarding CF carrier testing, and (2) identify the factors associated with changing practice patterns, including awareness of the statement, and knowledge about CF. Fifty-six percent (275) responded to the first mail questionnaire and 107 obstetricians responded to both questionnaires. In 1998, only 18% of respondents to the second questionnaire were familiar with the NIH statement, but 43% reported discussing testing with patients with no family history, a significant increase from 1997, when only 20% reported discussing testing. Less than one-third correctly answered six multiple-choice knowledge questions about CF and carrier testing. In multivariate analysis, knowledge and familiarity with the NIH consensus statement were not associated with beginning to discuss CF carrier testing after the CF conference with their patients without a family history.

Obstetrics & Gynecology, 1999

American Journal of Medical Genetics Part A, 2015

Journal of women's health & gender-based medicine, 2000

More information is needed about the relative effectiveness of prophylactic surgery, chemoprevent... more More information is needed about the relative effectiveness of prophylactic surgery, chemoprevention, and surveillance in reducing breast and ovarian cancer risk in women with an inherited susceptibility mutation. We assessed practical and ethical barriers to conducting randomized clinical trials (RCTs) to compare preventive interventions for breast and ovarian cancer. Eighty-seven at-risk women who attended an education and counseling session about BRCA1/2 testing were asked about their willingness to participate in hypothetical research studies for breast and ovarian cancer risk reduction. In addition, 247 Maryland physicians from five specialties completed a mail survey including a question about their likelihood of recommending RCT participation to an at-risk woman. Nineteen percent of at-risk women reported willingness to participate in a hypothetical RCT for breast cancer risk reduction and 17% for ovarian cancer risk reduction. Women with children and women likely to have a p...

Obstetrics and gynecology, 1998

To document the content and accuracy of discussions about prenatal genetic testing between obstet... more To document the content and accuracy of discussions about prenatal genetic testing between obstetric providers and pregnant women. The first prenatal visits of 169 pregnant women with 21 obstetricians and 19 certified nurse-midwives were audiotaped and analyzed for whether a discussion of family history or genetic testing took place and if so, its length, content, and accuracy. Family history was discussed in 60% of visits, maternal serum marker screening in 60%, second-trimester ultrasonography for fetal anomalies in 34%, and for women at least 35 years old, amniocentesis or chorionic villus sampling (CVS) in 98%. The length of discussions of genetic testing averaged 2.5 minutes for women younger than 35 years of age and 6.9 minutes for older women. Topics discussed most often were the practical details of testing, the purpose of testing, and the fact that testing is voluntary. Discussions seldom were comprehensive. Obstetricians were more likely to make a recommendation about test...

Science Communication, 2003

Personalized Medicine, 2012

Despite predictions of increased clinical applications, little is known about primary care provid... more Despite predictions of increased clinical applications, little is known about primary care providers' (PCPs') readiness to apply genomics to patient care. The aim was to assess PCPs' current experience with genetic testing, their assessment of the understandability and clinical utility of information in sample direct-to-consumer reports for genomic assessment of disease risk and warfarin dosing and attitudes toward genomic medicine. A web-based survey of PCPs who are members of Knowledge Networks' Physician Consulting Network was conducted. Of the 502 respondents (23.3% response rate), most ordered genetic tests infrequently. When presented with the direct-to-consumer genomic testing reports, most believed the reports were understandable, and would be willing to review results with a patient, and many believed the results would be helpful in patient management. Despite limited experience with genetic tests, PCPs are open to helping patients understand genomic information. However, additional physician education is needed.

Social Science & Medicine, 2003

After the announcement that sequencing of the human genome was nearly complete, media coverage wa... more After the announcement that sequencing of the human genome was nearly complete, media coverage was extensive. In light of ample evidence that the media are a primary source of health and science information, even for health professionals, media portrayals are often inaccurate or misleading, and discoveries that emanate from sequencing the human genome are likely to influence future health care, it is important to assess physicians' interpretations of media coverage about the human genome announcement. This paper describes the reactions of a sample of new physicians in the United States to this announcement, as well as the content of the stories they read or heard. Semi-structured surveys were distributed to all incoming houseofficers during Orientation at one major academic medical center. Eighty-one percent of 190 houseofficers returned a survey; 123 completed surveys were analyzed. Fifty-four percent of respondents thought the media message was only positive and 21% thought it was negative or mixed. Participants who reported radio as their media source were less likely to recall positive messages (p<0.05). Sixty-five percent and 76%, respectively, had positive perceptions of the impact of the accomplishment on people and on the medical profession. Overall, 48% were enthusiastic and 52% were guarded about the accomplishment. Enthusiasm was related to being an adult primary care houseofficer (p=0.07) or to having heard about it on television or in the newspaper (p<0.05). Of the 36 stories analyzed, newspaper and television reports focused more on medical implications and radio reports focused more on ethical issues. The degree of enthusiasm about the accomplishment reflects the content of the media coverage, and, at least for adult primary care houseofficers, probably reflects the increasing relevance of genetic discoveries to medical practice. Since physicians obtain much of their health and science information from the media, they can play an instrumental role in helping their patients interpret media coverage of advances in genetics and their impact on health care. However, this will require that physicians develop an appreciation of the newsmaking process, and how subtle interactions between politics, the media and science influence the "framing" of media coverage.

Community Genetics, 1998

... Nonrespondents were mailed postcard reminders 1 week after the original mailing. Questionnair... more ... Nonrespondents were mailed postcard reminders 1 week after the original mailing. Questionnaires mailed to physicians were accompanied by a 10-dollar incentive to respond. Physicians received postcard reminders a few days after the first mailing. ...

Obstetrics & Gynecology, 1999

To describe patient-obstetrician communication during the first prenatal visit and its relationsh... more To describe patient-obstetrician communication during the first prenatal visit and its relationship to physician gender and patient satisfaction. The first prenatal visit of 87 women with 21 obstetricians (11 male and ten female) was audiotaped and analyzed using the Roter Interaction Analysis System. Patient satisfaction was measured by postvisit questionnaire. Communication during first prenatal visits was largely biomedical, with little psychosocial or social discussion. Male physicians conducted longer visits than females (26 minutes versus 21.9 minutes, P < .05) and engaged in more facilitative communication (ie, making sure they were understood and providing direction and orientation) and explicit statements of concern and partnership (z > 1.96, P < .05). Female physicians devoted more communication to agreements, disagreements, and laughter than males (z > 1.96, P < .05). Satisfaction with physicians' emotional responsiveness and informational partnership was related to female physician gender and a variety of task-focused and affective communication variables. Communication and satisfaction between women and obstetricians during initial prenatal visits is related to physician gender and patient satisfaction. Male physicians conducted longer visits but women were more satisfied with female physicians.

The Journal of Law, Medicine & Ethics, 1993

ABSTRACT No abstract is available for this article.

Journal of Clinical Epidemiology, 2004

Journal of Adolescent Health, 2003

To better understand the process by which families at increased risk of disease would decide to e... more To better understand the process by which families at increased risk of disease would decide to enroll their children in genetic susceptibility research in order to develop recommendations regarding the informed consent process by which at-risk children are enrolled in such research in the future [corrected]. Parents and children (ages 10-17 years) from families at increased risk for heart disease (n = 21 dyads) or breast cancer (n = 16 dyads) participated in two face-to-face, audio-taped, semi-structured interviews: Initial interviews were conducted with parents and children separately, and follow-up family interviews were conducted 1 year later. Interview transcripts were coded based on common themes. Families vary in the stage at which, and degree to which, children would be involved in decision-making about research participation. In general, the older/more mature the child, the less risky the research and the more open the communication style, the greater the likelihood that decisions would be made jointly. Most children wanted some parental input, but still thought the final decision should be theirs. Most parents would want to make the initial decision about whether it would be reasonable to consider enrolling their child in the research being proposed, but none opposed the child having some time alone with the researcher. All parents and children in our study placed extreme importance on not forcing children to participate in nontherapeutic research if they do not want to. Decision-making about enrolling children in genetic susceptibility research should be based on an informed consent process that (a) gives parents and children sufficient opportunity to ask questions of the researcher(s) and to communicate with one another, and (b) gives children the opportunity to exercise their right to refuse participation without parental influence. This process should be tailored to the child's maturity level and style of communication in the family.

Genetics in Medicine, 2014

Genetics in Medicine, 2012

Hereditary hemorrhagic telangiectasia (HHT) is an autosomal dominant disorder of vascular develop... more Hereditary hemorrhagic telangiectasia (HHT) is an autosomal dominant disorder of vascular development resulting in direct connections between the arterial and venous systems, bypassing capillaries. Symptoms and signs can appear throughout life and marked intrafamilial variability confounds diagnosis based purely on clinical criteria. We set out to determine the impact of genetic testing on the cost of screening for HHT in at-risk relatives. We performed economic modeling of idealized pedigrees following two scenarios: repeated clinical screening until an HHT diagnosis could be either affirmed or excluded, and mutation testing in the proband, followed by genetic testing of at-risk relatives and clinical monitoring of only those relatives who test positive for the familial mutation. Based on actual reimbursement data from our region's largest health insurer, the molecular diagnostic model saved over 22,000forafamilywithfourrelativesatriskfortheinitialdiagnosticwork−up.Foracohortof100probands,thetotalsavingsforthemoleculardiagnosticmodeloverareasonableperiodoffollow−upwasgreaterthan22,000 for a family with four relatives at risk for the initial diagnostic work-up. For a cohort of 100 probands, the total savings for the molecular diagnostic model over a reasonable period of follow-up was greater than 22,000forafamilywithfourrelativesatriskfortheinitialdiagnosticwork−up.Foracohortof100probands,thetotalsavingsforthemoleculardiagnosticmodeloverareasonableperiodoffollow−upwasgreaterthan9 million. In this idealized setting in which all probands and at-risk relatives accepted molecular testing, the economic advantages of genetic screening over repeated clinical screening are substantial.