Faculty Bibliography

Genetic discrimination - defined as the denial of rights, privileges, or opportunities or other adverse treatment based solely on genetic information (including family history) - is an important concern to patients, healthcare professionals, lawmakers, and family members at risk for carrying a deleterious gene. Data from the United States, Canada, and Australia were collected from 433 individuals at risk for Huntington disease (HD) who have tested either positive or negative for the gene that causesHD and family members of affected individuals who have a 50% risk for developing the disorder but remain untested. Across all three countries, a total of 46.2% of respondents report genetic discrimination or stigma based on either their family history of HD or genetic testing for the HD gene mutation. We report on the overall incidence of discrimination and stigma in the domains of insurance (25.9%), employment (6.5%), relationships (32.9%), and other transactions (4.6%) in the United States, Canada, and Australia combined. The incidence of self-reported discrimination is less than the overall worry about the risk of discrimination, which is more prevalent in each domain. Despite a relatively low rate of perceived genetic discrimination in the areas of health insurance and employment, compared to the perception of discrimination and stigma in personal relationships, the cumulative burden of genetic discrimination across all domains of experience represents a challenge to those at risk for HD. The effect of this cumulative burden on daily life decisions remains unknown. 2010 Wiley-Liss, Inc

Genetic discrimination may be experienced in the day-to-day lives of people at risk for Huntington disease (HD), encompassing occurrences in the workplace, when seeking insurance, within social relationships, and during other daily encounters. At -risk individuals who have tested either positive or negative for the genetic expansion that causes HD, as well as at-risk persons with a 50% chance for developing the disorder but have not had DNA testing completed the International RESPOND-HD (I-RESPOND-HD) survey. One of the study's purposes was to examine perceptions of genetic stigmatization and discrimination. A total of 412 out of 433 participants provided narrative comments, and 191 provided related codable narrative data. The core theme, Information Control, refers to organizational policies and interpersonal actions. This theme was found in narrative comments describing genetic discrimination perceptions across employment, insurance, social, and other situations. These reports were elaborated with five themes: What They Encountered, What They Felt, What Others Did, What They Did, and What Happened. Although many perceptions were coded as hurtful, this was not true in all instances. Findings document that reports of genetic discrimination are highly individual, and both policy as well as interpersonal factors contribute to the outcome of potentially discriminating events. 2010 Wiley-Liss, Inc

Form dictates content, and the manner of recordkeeping imposed on us probably influences how we think about patients. At The New York Hospital, physicians began to maintain permanent patient case records in the early 1800s. Originally proposed and valued as teaching cases for medical students, these freeform patient records varied in quality and often reflected not just the medical care of the time but also the personalities of the physicians composing them. At the end of the 19th century, the change from retrospective to real-time recording of cases and the imposition of a fixed chart structure through the use of forms dramatically reduced the narrative dimension of the hospital course. Gradually, physicians found ways to circumvent these restrictions. Changes in record format, designed to manage increasing volumes of data, and physicians' responses to those changes parallel some of the contemporary threats to documentation posed by the electronic health record.

BACKGROUND: Despite new guidelines and nationally mandated regular assessments, managing pain in cognitively impaired patients remains a complex and challenging task. Numerous studies have focused on assessing pain in this population; however, studies of treatment are limited. PURPOSE: The purpose of this article was to characterize assessment and pain management strategies used by providers caring for hospitalized cognitively impaired patients with acute pain, and to assess for associations between amount of opioid received and specific adverse outcomes in this patient population. METHODS: Medical records of patients admitted to the Geriatrics Service or Orthopedic Service or evaluated by the Geriatrics Consult Service at an urban tertiary care hospital between September 01, 2006 and September 30, 2007 with cognitive impairment and an acute pain problem on admission were reviewed. RESULTS: Participants (N=100) had a mean age of 86 years (range=68-99), and were mostly female (83%) with fracture-related pain (62%). A numeric pain score was recorded in 67% of nursing assessments vs <5% of physician assessments. Opioids were prescribed for 100% of the surgical patients vs 43% of the medical patients. Only 15% of patients were placed on a standing analgesic regimen. Nonpharmacological management was employed for 75% of surgical patients vs 43% of medical patients. Delirium occurred in 27% of patients, and 33% experienced an interruption of physical therapy. Neither, however, was associated with level of opioid use. CONCLUSIONS: Current assessment and treatment practices in acute pain management for cognitively impaired patients vary widely (to include service and provider type). Implementation of evidence-based guidelines is needed to improve patient care.

Study Objective: To compare the accuracy of histological prediction of adnexal pathology based on the interpretation of sonographic imaging between gynecologists with specialized training in women's health imaging (WHI) and general radiologists (GR) at Bellevue Hospital Center. Design: Retrospective analysis of 237 consecutive cases of adnexal surgery. Setting: University-based tertiary teaching hospital, Department of Obstetrics and Gynecology. Patients: Two hundred thirty seven women (ages 13-81 years) with sonographic diagnosis of adnexal pathology who subsequently underwent surgical intervention. Intervention: Laparoscopy and/or laparotomy. Measurements and Main Results: Of the 237 patients analyzed, 102 (43%) had their pelvic ultrasound performed by WHI and 135 (57%) by GR. Surgical specimens confirmed cancer or low malignant potential lesions in 31 (13%) patients while 206 (87%) had benign pathology. Overall, the positive predictive value (PPV) of ultrasound for identifying cancer was 46.4% and the negative predictive value (NPV) was 91.4%. When the ability to predict malignancy was compared between GR and WHI, the PPV and NPV was 39% versus 80% and 91% versus 92%, respectively. The ultrasound impression "cannot rule out malignancy" was used in 38 (28%) and 6 (6%) of GR and WHI reports, respectively, however, malignancy was found in 19 (14%) of GR and 12 (12%) of WHI groups. Conclusion: Both WHI and GR ultrasound reports have comparable accuracy in terms of prediction of benign adnexal disease. WHI reports appear to have better positive predictive value for the detection of malignancy and contain fewer equivocal conclusions. Gynecologic laparoscopists should be aware of the limitations of ultrasound when relying exclusively on ultrasound imaging for patient counseling and decision making regarding the management of adnexal masses

BACKGROUND: Whether early detection and treatment of prostate cancer (PCa) will reduce disease-related mortality remains uncertain. As a result, tools are needed to facilitate informed decision making. While there have been several decision aids (DAs) developed and tested, very few have included an exercise to help men clarify their values and preferences about PCa screening. Further, only one DA has utilized an interactive web-based format, which allows for an expansion and customization of the material. We describe the development of two DAs, a booklet and an interactive website, each with a values clarification component and designed for use in diverse settings. METHODS: We conducted two feasibility studies to assess men's (45-70 years) Internet access and their willingness to use a web- vs. a print-based tool. The booklet was adapted from two previous versions evaluated in randomized controlled trials (RCTs) and the website was created to closely match the content of the revised booklet. Usability testing was conducted to obtain feedback regarding draft versions of the materials. The tools were also reviewed by a plain language expert and the interdisciplinary research team. Feedback on the content and presentation led to iterative modifications of the tools. RESULTS: The feasibility studies confirmed that the Internet was a viable medium, as the majority of men used a computer, had access to the Internet, and Internet use increased over time. Feedback from the usability testing on the length, presentation, and content of the materials was incorporated into the final versions of the booklet and website. Both the feasibility studies and the usability testing highlighted the need to address men's informed decision making regarding screening. CONCLUSIONS: Informed decision making for PCa screening is crucial at present and may be important for some time, particularly if a definitive recommendation either for or against screening does not emerge from ongoing prostate cancer screening trials. We have detailed our efforts at developing print- and web-based DAs to assist men in determining how to best meet their PCa screening preferences. Following completion of our ongoing RCT designed to test these materials, our goal will be to develop a dissemination project for the more effective tool. TRIAL REGISTRATION: NCT00623090.