Decision making among Veterans with incidental pulmonary nodules: a qualitative analysis.

Purpose: Among patients undergoing lung cancer evaluation for newly diagnosed, incidental pulmonary nodules, it is important to evaluate the shared power and responsibility domain of patient-centered communication. We explored Veterans' perceptions of decision making with regards to an incidentally-detected pulmonary nodule.

Methods: We conducted semi-structured, qualitative interviews of 19 Veterans from one medical center with incidentally-detected pulmonary nodules that were judged as having a low risk for malignancy.

The translational potential of research on the ethical, legal, and social implications of genomics.

Federally funded research on the ethical, legal, and social implications (ELSI) of genomics includes a programmatic charge to consider policy-relevant questions and to communicate findings in venues that help inform the policy-making process. In addressing this goal, investigators must consider the range of policies that are relevant to human genetics; how foundational research in bioethics, law, and the social sciences might inform those policies; and the potential professional issues that this translational imperative raises for ELSI investigators. We review these questions in light of experiences from a consortium of federally funded Centers of Excellence in ELSI Research, and offer a set of policy recommendations for program design and evaluation of ELSI research.

Breastfeeding infants with phenylketonuria in the United States and Canada.

Objective: This study described the prevalence and duration of mothers' breastfeeding infants with phenylketonuria (PKU) and explored factors related to duration of breastfeeding as a surrogate for breastfeeding success.

Subjects And Methods: Descriptive analysis as performed from an international Internet survey of mothers (n=103) who met the inclusion criteria: (1) at least 21 years of age, (2) able to read and write in English, (3) child with PKU, and (4) living in the United States or Canada.

Results: Of the 103 mothers, 89 (86%) initiated breastfeeding immediately following delivery, whereas 14 (14%) chose bottle feeding.

Essential elements of personalized medicine.

Objectives: Genomic information has been promoted as the basis for "personalized" health care. We considered the benefits provided by genomic testing in context of the concept of personalized medicine.

Materials And Methods: We evaluated current and potential uses of genomic testing in health care, using prostate cancer as an example, and considered their implications for individualizing or otherwise improving health care.

What the heck is a "nodule"? A qualitative study of veterans with pulmonary nodules.

Rationale: Every year, hundreds of thousands of patients are diagnosed with incidentally detected pulmonary nodules, and if lung cancer screening is widely implemented, thousands more will be identified. The psychosocial outcomes associated with incidental nodule detection in general practice settings are virtually unknown.

Objectives: The purpose of this study was to explore the experiences of patients with incidentally diagnosed pulmonary nodules.

Recommendations for returning genomic incidental findings? We need to talk!

The American College of Medical Genetics and Genomics recently issued recommendations for reporting incidental findings from clinical whole-genome sequencing and whole-exome sequencing. The recommendations call for evaluating a specific set of genes as part of all whole-genome sequencing/whole-exome sequencing and reporting all pathogenic variants irrespective of patient age. The genes are associated with highly penetrant disorders for which treatment or prevention is available.

Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet Personal Health Record Pilot: qualitative study.

Background: Full sharing of the electronic health record with patients has been identified as an important opportunity to engage patients in their health and health care. The My HealtheVet Pilot, the initial personal health record of the US Department of Veterans Affairs, allowed patients and their delegates to view and download content in their electronic health record, including clinical notes, laboratory tests, and imaging reports.

Objective: A qualitative study with purposeful sampling sought to examine patients' views and experiences with reading their health records, including their clinical notes, online.

Communication by nurses in the intensive care unit: qualitative analysis of domains of patient-centered care.

Background: High-quality communication is a key determinant and facilitator of patient-centered care. Nurses engage in most of the communication with patients and patients' families in the intensive care unit.

Objective: To perform a qualitative analysis of nurses' communications.

Life-sustaining treatment decisions in the ICU for patients with ESLD: a prospective investigation.

We conducted a prospective study in the ICU of life-sustaining treatment and comfort care decisions over time in patients with end-stage liver disease (ESLD) from the perspectives of patients, family members, and healthcare professionals. Six patients with ESLD, 19 family members, and 122 professionals participated. The overarching theme describing the decision-making process was "on the train.

IRB perspectives on the return of individual results from genomic research.

Purpose: Return of individual research results from genomic studies is a hotly debated ethical issue in genomic research. However, the perspective of key stakeholders-institutional review board (IRB) professionals-has been missing from this dialogue. This study explores the positions and experiences of IRB members and staff regarding this issue.

Who is attending? End-of-life decision making in the intensive care unit.

Purpose: Traditional expectations of the single attending physician who manages a patient's care do not apply in today's intensive care units (ICUs). Although many physicians and other professionals have adapted to the complexity of multiple attendings, ICU patients and families often expect the traditional, single physician model, particularly at the time of end-of-life decision making (EOLDM). Our purpose was to examine the role of ICU attending physicians in different types of ICUs and the consequences of that role for clinicians, patients, and families in the context of EOLDM.

Predictors of recruited melanoma families into a behavioral intervention project.

Background: Examination of families represents an important priority in health research. In this paper we report on individual and family-level factors associated with enrollment in a cancer prevention research project. We approached families affected by melanoma for possible participation in a randomized controlled trial of a web-based communication and support intervention.

Genetic screening.

Current approaches to genetic screening include newborn screening to identify infants who would benefit from early treatment, reproductive genetic screening to assist reproductive decision making, and family history assessment to identify individuals who would benefit from additional prevention measures. Although the traditional goal of screening is to identify early disease or risk in order to implement preventive therapy, genetic screening has always included an atypical element-information relevant to reproductive decisions. New technologies offer increasingly comprehensive identification of genetic conditions and susceptibilities.

Personal attributions for melanoma risk in melanoma-affected patients and family members.

Personal attributions for cancer risk involve factors that individuals believe contribute to their risk for developing cancer. Understanding personal risk attributions for melanoma may dictate gene-environment melanoma risk communication strategies. We examined attributions for melanoma risk in a population-based sample of melanoma survivors, first degree family members, and family members who are also parents (N = 939).

Using a family systems approach to investigate cancer risk communication within melanoma families.

Objective: The family provides an important communication nexus for information and support exchange about family cancer history, and adoption of family-wide cancer risk reduction strategies. The goals of this study were to (1) use the family systems theory to identify characteristics of this sample of families at increased risk of developing melanoma and (2) to relate familial characteristics to the frequency and style of familial risk communication.

Methods: Participants were first-degree relatives (n=313) of melanoma patients, recruited into a family web-based intervention study.

Breast cancer risk communication: assessment of primary care physicians by standardized patients.

Purpose: To assess primary care providers' communication about breast cancer risk.

Methods: We evaluated 86 primary care providers' communication of risk using unannounced standardized (simulated) patients. Physicians were randomly assigned to receive one of three cases: (1) moderate risk case (n = 25), presenting with a breast lump and mother with postmenopausal breast cancer; (2) high-risk (maternal side) case (n = 28), presenting with concern about breast cancer risk; and (3) high-risk (paternal side) case (n = 33), presenting with an unrelated problem.

Genetic assessment of breast cancer risk in primary care practice.

Family history is increasingly important in primary care as a means to detect candidates for genetic testing or tailored prevention programs. We evaluated primary care physicians' skills in assessing family history for breast cancer risk, using unannounced standardized patient (SP) visits to 86 general internists and family medicine practitioners in King County, WA. Transcripts of clinical encounters were coded to determine ascertainment of family history, risk assessment, and clinical follow-up.

Performance of the U.S. Office of Management and Budget's Revised Race and Ethnicity Categories in Asian Populations*.

OBJECTIVES: The U.S. Office of Management and Budget (OMB) guidelines for collecting and reporting race and ethnicity information recently divided the "Asian or Pacific Islander" category into "Asian" and "Native Hawaiian or Other Pacific Islander".

Anticipating dissemination of cancer genomics in public health: a theoretical approach to psychosocial and behavioral challenges.

Background: Given the recent sequencing of the human genome, genetic susceptibility information will probably be increasingly useful in the prevention and control of many common diseases, including cancer.

Purpose: Although much is known about psychosocial factors related to the impact of cancer genetic testing among high-risk families in specialized clinic settings, much less is known about how genetic susceptibility information may contribute to the health and well-being of the general population.

Methods: We present a theoretical synthesis drawn from the health communication and health behavior change traditions to guide research examining psychosocial and behavioral challenges central to dissemination of cancer genomics in public health.

Program management and policy issues in information outreach: lessons from Tribal Connections.

With the advent of the Internet, American Indian/Alaska Native (AI/AN) communities in the Pacific Northwest have new opportunities to access high quality and relevant health information. The Pacific Northwest Regional Medical Library (PNRML), regional headquarters of the National Network of Libraries of Medicine, a program sponsored by the National Library of Medicine, sought to facilitate that access and worked with a selected group of sixteen tribes and native village consortia. The steps were: (1) work with AI/AN communities to arrive at mutually-agreeable health information connectivity objectives and long-term solutions, (2) provide funding to AI/AN communities to ensure Internet connectivity and the presence of Internet workstations for health workers and for the public, and (3) train in effective health information seeking.

Genetic information: Special or not? Responses from focus groups with members of a health maintenance organization.

Genetic information is used increasingly in health care. Some experts have argued that genetic information is qualitatively different from other medical information and, therefore, raises unique social issues. This view, called "genetic exceptionalism," has importantly influenced recent policy efforts.

Recommendations for the care of individuals with an inherited predisposition to Lynch syndrome: a systematic review.

Context: About 2% of all colorectal cancer occurs in the context of the autosomal dominantly inherited Lynch syndrome, which is due to mutations in mismatch repair genes. Potential risk-reducing interventions are recommended for individuals known to have these mutations.

Objectives: To review cancer risks and data on screening efficacy in the context of Lynch syndrome (hereditary nonpolyposis colorectal cancer) and to provide recommendations for clinical management for affected families, based on available evidence and expert opinion.

Genetics as a tool to improve cancer outcomes: ethics and policy.

Genetic research is rapidly increasing the opportunities for the detection of inherited cancer risk. Clinicians and policy makers must ensure the adequate evaluation of the benefits and harms of this new area of practice, address the challenges of family-based detection of individuals at risk and develop practice guidelines and educational strategies that are responsive to rapidly changing knowledge. When the benefits of testing are well established, efforts must also be made to ensure access to genetic services for all who can benefit.