Lisa Soleymani Lehmann

Health Literacy not Race Predicts End-of-Life Care Preferences

BACKGROUND Several studies have reported that African Americans are more likely than whites to prefer aggressive treatments at the end of life. OBJECTIVE Since the medical information presented to subjects is frequently complex, we hypothesized that apparent differences in end-of-life preferences and decision making may be due to disparities in health literacy. A video of a patient with advanced dementia may overcome communication barriers associated with low health literacy. DESIGN Before and after oral survey. PARTICIPANTS Subjects presenting to their primary care doctors. METHODS Subjects were asked their preferences for end-of-life care after they heard a verbal description of advanced dementia. Subjects then viewed a 2-minute video of a patient with advanced dementia and were asked again about their preferences. For the analysis, preferences were dichotomized into comfort care and aggressive care. Health literacy was measured using the Rapid Estimate of Adult Literacy in Medicine (REALM) and subjects were divided into three literacy categories: low (0-45, sixth grade and below), marginal (46-60, seventh to eighth grade) and adequate (61-66, ninth grade and above). Unadjusted and adjusted logistic regression models were fit using stepwise algorithms to examine factors related to initial preferences before the video. RESULTS A total of 80 African Americans and 64 whites completed the interview. In unadjusted analyses, African Americans were more likely than whites to have preferences for aggressive care after the verbal description, odds ratio (OR) 4.8 (95% confidence interval [CI] 2.1-10.9). Subjects with low or marginal health literacy were also more likely than subjects with adequate health literacy to have preferences for aggressive care after the verbal description, OR 17.3 (95% CI 6.0-49.9) and OR 11.3 (95% CI 4.2-30.8) respectively. In adjusted analyses, health literacy (low health literacy: OR 7.1, 95% CI 2.1-24.2; marginal health literacy OR 5.1, 95% CI 1.6-16.3) but not race (OR 1.1, 95% CI 0.3-3.2) was an independent predictor of preferences after the verbal description. After watching a video of advanced dementia, there were no significant differences in the distribution of preferences by race or health literacy. CONCLUSIONS Health literacy and not race was an independent predictor of end-of-life preferences after hearing a verbal description of advanced dementia. In addition, after viewing a video of a patient with advanced dementia there were no longer any differences in the distribution of preferences according to race and health literacy. These findings suggest that clinical practice and research relating to end-of-life preferences may need to focus on a patient education model incorporating the use of decision aids such as video to ensure informed decision-making.

A survey of medical ethics education at U.S. and Canadian medical schools

Purpose. To assess the format, content, method, and placement of medical ethics education in medical schools; the faculty and curricular resources and institutional structure and support of medical ethics; and the perceptions of ethics education among deans of medical education and medical ethics course directors at U.S. and Canadian medical schools. Method. Two questionnaires were mailed to 125 U.S. medical schools and 16 Canadian schools: one to be completed by the deans of medical education and one to be completed by the medical ethics course director. Descriptive statistics were used to compare responses. Results. In all, 123 (87%) deans and 91 (64%) course directors responded, providing information about 91 schools (six Canadian). All responding institutions offered some formal instruction in medical ethics, and among these, 71 (78%) incorporated ethics into required preclinical courses. The primary pedagogic course structure was small-group discussion and the primary pedagogic method was case discussions. One-fifth of schools provided no funding for ethics teaching, and 47 (52%) did not fund curricular development in ethics. Institutions with a dedicated ethics faculty member were twice as likely to have a mandatory introductory ethics course (64% versus 32%, p < .05). The primary obstacles to ethics education were thought to be a lack of time in the curriculum, a lack of qualified teachers, and a lack of time in faculty schedules. Conclusions. Within a few decades the number of U.S. and Canadian medical schools requiring medical ethics has increased. Nevertheless, significant variation in the content, method, and timing of ethics education suggests consensus about curricular content and pedagogic methods remains lacking. Further progress in ethics education may depend on institutions’ willingness to devote more curricular time and funding to medical ethics.

The MedSeq Project: a randomized trial of integrating whole genome sequencing into clinical medicine

BackgroundWhole genome sequencing (WGS) is already being used in certain clinical and research settings, but its impact on patient well-being, health-care utilization, and clinical decision-making remains largely unstudied. It is also unknown how best to communicate sequencing results to physicians and patients to improve health. We describe the design of the MedSeq Project: the first randomized trials of WGS in clinical care.Methods/DesignThis pair of randomized controlled trials compares WGS to standard of care in two clinical contexts: (a) disease-specific genomic medicine in a cardiomyopathy clinic and (b) general genomic medicine in primary care. We are recruiting 8 to 12 cardiologists, 8 to 12 primary care physicians, and approximately 200 of their patients. Patient participants in both the cardiology and primary care trials are randomly assigned to receive a family history assessment with or without WGS. Our laboratory delivers a genome report to physician participants that balances the needs to enhance understandability of genomic information and to convey its complexity. We provide an educational curriculum for physician participants and offer them a hotline to genetics professionals for guidance in interpreting and managing their patients’ genome reports. Using varied data sources, including surveys, semi-structured interviews, and review of clinical data, we measure the attitudes, behaviors and outcomes of physician and patient participants at multiple time points before and after the disclosure of these results.DiscussionThe impact of emerging sequencing technologies on patient care is unclear. We have designed a process of interpreting WGS results and delivering them to physicians in a way that anticipates how we envision genomic medicine will evolve in the near future. That is, our WGS report provides clinically relevant information while communicating the complexity and uncertainty of WGS results to physicians and, through physicians, to their patients. This project will not only illuminate the impact of integrating genomic medicine into the clinical care of patients but also inform the design of future studies.Trial registrationClinicalTrials.gov identifierNCT01736566

Disclosure of familial genetic information: perceptions of the duty to inform.

BACKGROUND The familial implications of genetic information can lead to a conflict between a physicians duties to maintain patient confidentiality and to inform at-risk relatives about susceptibility to genetic diseases. As genes are discovered that can identify patients at risk of adverse outcomes, this conflict has become the subject of discussion and debate. METHODS We performed a one-time telephone survey of a population-based sample of 200 Jewish women to assess knowledge and attitudes about genetic testing. Attitudes toward sharing genetic test results with family members were evaluated using three hypothetical scenarios that described an easily preventable disease, a disease (breast cancer) in which the only option for prevention was prophylactic mastectomies, and a nonpreventable disease. RESULTS Nearly all respondents believed that a patient should inform at-risk family members when the disease was preventable (100% and 97% in the relevant scenarios), compared with only 85% who felt a duty to inform at-risk family members about a nonpreventable disease (P <0.001). The proportions of respondents who believed that physicians should seek out and inform at-risk family members against a patients wishes was much lower: only 18% of respondents to the easily preventable disease scenario, 22% of respondents to the breast cancer scenario, and 16% of respondents to the nonpreventable disease scenario. CONCLUSIONS Most women surveyed believed that genetic information should be shared within families, unless it violated a patients wishes. These sorts of opinions should be considered in the debate over the confidentiality of genetic information.

The ethics of medical education.

Medical students and doctors in training need to hone their clinical skills on patients to make themselves better doctors, but patients may not benefit directly from such attention. Jagsi and Lehmann consider this ethical dilemma and suggest ways to minimise the potential harm to patients

A population-based study of Ashkenazi Jewish women’s attitudes toward genetic discrimination and BRCA1/2 testing

Purpose: The Human Genome Project continues to produce an increasing number of genetic susceptibility tests. Some of these genetic tests target social or ethnic groups who are at increased risk of developing a disease. The Ashkenazi Jewish community is one ethnic group that is an ongoing subject of genetic investigation. We assessed the attitudes of a population-based sample of Ashkenazi Jewish women toward breast–ovarian cancer susceptibility testing (BRCA1/2). In particular, we assessed concerns about group discrimination, perceptions of the advantages and disadvantages of BRCA1/2 testing, and the relationship between concerns about discrimination and the potential benefits of genetic testing.Methods: A telephone survey of a population-based sample of 200 Jewish women.Results: A minority of women (17%) in this study expressed concern or discomfort with Jews being offered BRCA1/2 testing. Most women believed there were scientific reasons for testing Jews (71%), and only 5% of women felt that research that focused on Jews was bad for Jews as a group. Increased concern about genetic discrimination was associated with women who were highly educated (odds ratio 2.68). Forty percent of women surveyed were interested in BRCA1/2 testing, 40% were not interested, and 20% were uncertain about whether they would obtain BRCA1/2 testing. Increased interest in genetic testing was associated with a desire to obtain information about children’s risk of disease and valuing information for its own sake.Conclusions: The majority of a population-based sample of Jewish women did not express concerns about group discrimination resulting from genetic testing. Women who are highly educated are more concerned about genetic discrimination. There is significant variation among Jewish women’s interest in breast cancer susceptibility testing.

The essential role of medical ethics education in achieving professionalism: the Romanell Report.

This article—the Romanell Report—offers an analysis of the current state of medical ethics education in the United States, focusing in particular on its essential role in cultivating professionalism among medical learners. Education in ethics has become an integral part of medical education and training over the past three decades and has received particular attention in recent years because of the increasing emphasis placed on professional formation by accrediting bodies such as the Liaison Committee on Medical Education and the Accreditation Council for Graduate Medical Education. Yet, despite the development of standards, milestones, and competencies related to professionalism, there is no consensus about the specific goals of medical ethics education, the essential knowledge and skills expected of learners, the best pedagogical methods and processes for implementation, and optimal strategies for assessment. Moreover, the quality, extent, and focus of medical ethics instruction vary, particularly at the graduate medical education level. Although variation in methods of instruction and assessment may be appropriate, ultimately medical ethics education must address the overarching articulated expectations of the major accrediting organizations. With the aim of aiding medical ethics educators in meeting these expectations, the Romanell Report describes current practices in ethics education and offers guidance in several areas: educational goals and objectives, teaching methods, assessment strategies, and other challenges and opportunities (including course structure and faculty development). The report concludes by proposing an agenda for future research.

A web-based, patient-centered toolkit to engage patients and caregivers in the acute care setting: a preliminary evaluation

We implemented a web-based, patient-centered toolkit that engages patients/caregivers in the hospital plan of care by facilitating education and patient-provider communication. Of the 585 eligible patients approached on medical intensive care and oncology units, 239 were enrolled (119 patients, 120 caregivers). The most common reason for not approaching the patient was our inability to identify a health care proxy when a patient was incapacitated. Significantly more caregivers were enrolled in medical intensive care units compared with oncology units (75% vs 32%; P < .01). Of the 239 patient/caregivers, 158 (66%) and 97 (41%) inputted a daily and overall goal, respectively. Use of educational content was highest for medications and test results and infrequent for problems. The most common clinical theme identified in 291 messages sent by 158 patients/caregivers was health concerns, needs, preferences, or questions (19%, 55 of 291). The average system usability scores and satisfaction ratings of a sample of surveyed enrollees were favorable. From analysis of feedback, we identified barriers to adoption and outlined strategies to promote use.

Are physicians prepared for whole genome sequencing? a qualitative analysis.

Although the integration of whole genome sequencing (WGS) into standard medical practice is rapidly becoming feasible, physicians may be unprepared to use it. Primary care physicians (PCPs) and cardiologists enrolled in a randomized clinical trial of WGS received genomics education before completing semi‐structured interviews. Themes about preparedness were identified in transcripts through team‐based consensus‐coding. Data from 11 PCPs and 9 cardiologists suggested that physicians enrolled in the trial primarily to prepare themselves for widespread use of WGS in the future. PCPs were concerned about their general genomic knowledge, while cardiologists were concerned about how to interpret specific types of results and secondary findings. Both cohorts anticipated preparing extensively before disclosing results to patients by using educational resources with which they were already familiar, and both cohorts anticipated making referrals to genetics specialists as needed. A lack of laboratory guidance, time pressures, and a lack of standards contributed to feeling unprepared. Physicians had specialty‐specific concerns about their preparedness to use WGS. Findings identify specific policy changes that could help physicians feel more prepared, and highlight how providers of all types will need to become familiar with interpreting WGS results.

Consumer Perceptions of Interactions With Primary Care Providers After Direct-to-Consumer Personal Genomic Testing

BACKGROUND Direct-to-consumer (DTC) personal genomic testing (PGT) allows individuals to learn about their genetic makeup without going through a physician, but some consumers share their results with their primary care provider (PCP). OBJECTIVE To describe the characteristics and perceptions of DTC PGT consumers who discuss their results with their PCP. DESIGN Longitudinal, prospective cohort study. SETTING Online survey before and 6 months after results. PARTICIPANTS DTC PGT consumers. MEASUREMENTS Consumer satisfaction with the DTC PGT experience; whether and, if so, how many results could be used to improve health; how many results were not understood; and beliefs about the PCPs understanding of genetics. Participants were asked with whom they had discussed their results. Genetic reports were linked to survey responses. RESULTS Among 1026 respondents, 63% planned to share their results with a PCP. At 6-month follow-up, 27% reported having done so, and 8% reported sharing with another health care provider only. Common reasons for not sharing results with a health care provider were that the results were not important enough (40%) or that the participant did not have time to do so (37%). Among participants who discussed results with their PCP, 35% were very satisfied with the encounter, and 18% were not at all satisfied. Frequently identified themes in participant descriptions of these encounters were actionability of the results or use in care (32%), PCP engagement or interest (25%), and lack of PCP engagement or interest (22%). LIMITATION Participants may not be representative of all DTC PGT consumers. CONCLUSION A comprehensive picture of DTC PGT consumers who shared their results with a health care provider is presented. The proportion that shares results is expected to increase with time after testing as consumers find opportunities for discussion at later appointments or if results become relevant as medical needs evolve. PRIMARY FUNDING SOURCE National Institutes of Health.