Bioethics and Medical Ethics Commons^™

Prenatal Phenotyping Of Fetal Tubulinopathies: A Multicenter Retrospective Case Series, Bobby K Brar, Marisa Gilstrop Thompson, Neeta L Vora, Kelly Gilmore, Karin Blakemore, Kristen A Miller, Jessica Giordano, Andreas Dufke, Beatrix Wong, Samantha Stover, Billie Lianoglou, Ignatia Van Den Veyver, Esther Dempsey, Mara Rosner, Karen Chong, David Chitayat, Teresa N Sparks, Mary E Norton, Ronald Wapner, Kristin Baranano, Angie C Jelin, Fetal Sequencing Consortium

Center for Medical Ethics and Health Policy Staff Publications

Objective: Tubulinopathies refer to conditions caused by genetic variants in isotypes of tubulin resulting in defective neuronal migration. Historically, diagnosis was primarily via postnatal imaging. Our objective was to establish the prenatal phenotype/genotype correlations of tubulinopathies identified by fetal imaging.

Methods: A large, multicenter retrospective case series was performed across nine institutions in the Fetal Sequencing Consortium. Demographics, fetal imaging reports, genetic screening and diagnostic testing results, delivery reports, and neonatal imaging reports were extracted for pregnancies with a confirmed molecular diagnosis of a tubulinopathy.

Results: Nineteen pregnancies with a fetal tubulinopathy were identified. The most common prenatal imaging findings …

Effect Of Problem-Solving Treatment On Self-Reported Disability Among Veterans With Gulf War Illness: A Randomized Clinical Trial, Lisa M Mcandrew, Karen S Quigley, Shou-En Lu, David Litke, Joseph F Rath, Gudrun Lange, Susan L Santos, Nicole Anastasides, Beth Ann Petrakis, Lauren Greenberg, Drew A Helmer, Wilfred R Pigeon

Center for Medical Ethics and Health Policy Staff Publications

Importance: Few evidence-based treatments are available for Gulf War illness (GWI). Behavioral treatments that target factors known to maintain the disability from GWI, such as problem-solving impairment, may be beneficial. Problem-solving treatment (PST) targets problem-solving impairment and is an evidence-based treatment for other conditions.

Objective: To examine the efficacy of PST to reduce disability, problem-solving impairment, and physical symptoms in GWI.

Design, setting, and participants: This multicenter randomized clinical trial conducted in the US Department of Veterans Affairs compared PST with health education in a volunteer sample of 511 Gulf War veterans with GWI and disability (January 1, 2015, to …

Psychiatric Medications: Does Education Affect Medication Prescriptions?, Surina M. Narine, Mary D. Ramos, Sarah Chu

Symposium of Student Scholars

Background: There is a lack of research on racial challenges among underrepresented adolescents regarding prescription drug use for mental illnesses. Purpose: This study addressed the following question: In adolescent minorities, how does education about racial disparity and culture affect the stigma and number of prescriptions written for psychiatric medications? This evidence-based practice project aimed to identify if racial awareness directly impacts the amount of psychiatric medication prescribed for adolescent minorities. Methods: Literature reviews analyzed qualitative and quantitative data to provide correlating information on racial disparities and psychotropic medications. This study examined the following possible factors for decreased prescribed drugs within …

Telerehabilitation: Future Of Phase Ii Cardiac Rehabilitation: Review Of Preliminary Outcomes, Mon S Bryant, Savitri E Fedson, Alexander Schutz, Lorraine D Cornwell, Amir Sharafkhaneh, Bandi Venkata

Center for Medical Ethics and Health Policy Staff Publications

In this brief communication, we reported Telehealth Home-Based Cardiac Rehabilitation (CR) program structure and preliminary outcomes from patients that completed a 12-week program after coronary artery bypass graft surgery (CABG). We aim to advocate the use of Telerehabilitation as a Phase II CR in patients immediately after the CABG. This approach was innovative and encouraging because the patients were still in subacute phase. The program can serve as a continuation of care for the patients after being discharged from a hospital while regaining their functional ability at home. Our preliminary outcomes demonstrated improvements in resting heart rate, activity level, nutrition …

Whistleblowing As An Anti-Corruption Strategy In Health And Pharmaceutical Organizations: A Scoping Review Protocol., Taryn Vian, Brianna Agnew Mph, Keith Mcinnes Jr

Nursing and Health Professions Faculty Research and Publications

Background

Whistleblowing can bring suspected wrongdoing to the attention of someone who is in the position to rectify the problem. Whistleblowing research can help improve effectiveness of anti-corruption efforts in the health sector.

Objective

The objective of this scoping review is to understand the extent and type of evidence on whistleblowing as an anti-corruption strategy in health and pharmaceutical organizations in low- and middle-income countries (LMICs).

Methods

This scoping review searched the PubMed, Scopus, and EMBASE databases from 2005 to 2020, limited to English language. We also searched websites of multilateral agencies or international non-governmental organizations for policy documents, guidance …

Impact Of A Multifaceted Intervention On Physicians' Knowledge, Attitudes And Practices In Relation To Pharmaceutical Incentivisation: Protocol For A Randomised Control Trial, Muhammad Naveed Noor, Mishal Khan, Afifah Rahman-Shepherd, Amna Rehana Siddiqui, Sabeen Sharif Khan, Iqbal Azam, Sadia Shakoor, Rumina Hasan

Department of Pathology and Laboratory Medicine

Introduction: In settings where the private sector constitutes a larger part of the health system, profit-gathering can take primacy over patients' well-being. In their interactions with pharmaceutical companies, private general practitioners (GPs) can experience the conflict of interest (COI), a situation whereby the impartiality of GPs' professional decision making may be influenced by secondary interests such as financial gains from prescribing specific pharmaceutical brands.
Methods and analysis: This study is a randomised controlled trial to assess the impact of a multifaceted intervention on GPs' medical practice. The study sample consists of 419 registered GPs who own/work in private clinics and …

Impact Of Moral Injury On Work Performance In Nurses Following The Covid-19 Surges, Annette Callis, Trisha Saul, Ross Bindler

Articles, Abstracts, and Reports

Background

Moral Injury (MI) was defined by Jonathan Shay in 1994 as committing acts that betray one’s moral compass in high-stakes situations, while under the authority of another, that severely affect one’s well-being. MI was measured solely in the military prior to the COVID pandemic.

Aims

1.Explore the relationship between moral injury (MI) and perceived work performance in hospital nurses following the pandemic surges. 2. Determine relationships between MI and select participant demographics and between work performance and select demographics.

Sample

A convenience sample of 191 nurses from seven Southern California Hospitals participated in the study from March to June …

Proteogenomic Markers Of Chemotherapy Resistance And Response In Triple-Negative Breast Cancer, Meenakshi Anurag, Eric J Jaehnig, Karsten Krug, Jonathan T Lei, Erik J Bergstrom, Beom-Jun Kim, Tanmayi D Vashist, Anh Minh Tran Huynh, Yongchao Dou, Xuxu Gou, Chen Huang, Zhiao Shi, Bo Wen, Viktoriya Korchina, Richard A Gibbs, Donna M Muzny, Harshavardhan Doddapaneni, Lacey E Dobrolecki, Henry Rodriguez, Ana I Robles, Tara Hiltke, Michael T Lewis, Julie R Nangia, Maryam Nemati Shafaee, Shunqiang Li, Ian S Hagemann, Jeremy Hoog, Bora Lim, C Kent Osborne, D R Mani, Michael A Gillette, Bing Zhang, Gloria V Echeverria, George Miles, Mothaffar F Rimawi, Steven A Carr, Foluso O Ademuyiwa, Shankha Satpathy, Matthew J Ellis

Center for Medical Ethics and Health Policy Staff Publications

Microscaled proteogenomics was deployed to probe the molecular basis for differential response to neoadjuvant carboplatin and docetaxel combination chemotherapy for triple-negative breast cancer (TNBC). Proteomic analyses of pretreatment patient biopsies uniquely revealed metabolic pathways, including oxidative phosphorylation, adipogenesis, and fatty acid metabolism, that were associated with resistance. Both proteomics and transcriptomics revealed that sensitivity was marked by elevation of DNA repair, E2F targets, G2-M checkpoint, interferon-gamma signaling, and immune-checkpoint components. Proteogenomic analyses of somatic copy-number aberrations identified a resistance-associated 19q13.31-33 deletion where LIG1, POLD1, and XRCC1 are located. In orthogonal datasets, LIG1 (DNA ligase I) gene deletion and/or low mRNA …

Applying Lessons Learned: Nursing Facility Administrators’ Operational And Ethical Challenges During Covid-19, Mary Eleanor R. Wickersham

Journal of Health Ethics

Operational and ethical challenges for nursing homes across the United States during the COVID-19 pandemic were daunting, that experience perhaps only a forecast of future epidemics that nursing home administrators and operators may face. This article describes administrator-identified challenges and focuses on how nursing homes might learn from their experiences by increasing flexibility to meet evolving needs, improving quality assurance and disaster planning, using ethics policies and ethical decision-making processes to work through difficult decisions, and leading the way in creating new policies that will make nursing home care safer and more appropriate for patients with ever changing needs.

Theory Building As Integrated Reflection: Understanding Physician Reflection Through Human Communication Research, Medical Education, And Ethics, Andrea Vicini, Ashley P. Duggan, Allen F. Shaughnessy

Journal of Health Ethics

Grounded in a presupposition that a single explanatory framework cannot fully account for the expansive learning processes that occur during medical residency, the article examines developing physicians’ reflective writing from three disciplinary lenses. The goal is to understand how the multi-dimensional nature of medical residency translates into assembling educational experiences and constructing meaning that cannot be fully explained through a single discipline. An interdisciplinary research team across medical education, communication, and ethics qualitatively analyzed reflective entries (N=756) completed by family medicine residents (N=33) across an academic year. Results provide evidence for moving toward an integrated thematic explanation across disciplines. The …

Discussing The Injustice Of The Covid-19 Vaccine Pass Imposed On Medical Consultation In Public Hospitals In Hong Kong, Fung Kei Cheng

Journal of Health Ethics

The COVID-19 pandemic has devastated public health, economy and social life all over the world, especially wherever a vaccine pass scheme has been implemented. Many countries have begun to relax schedules to return to normal activities. In contrast, Hong Kong continues to tighten the utilisation of a vaccine pass for medical services in order to boost vaccination rates. Such a practice not only significantly challenges ethical and operative concerns but also threatens health equity and social justice for healthcare decision-makers and practitioners, consequently hurting public health and community well-being. This discussion analyses the various arguments, reviews vaccine hesitancy and suggests …

Safety Analysis Of High-Dose Methotrexate In Pediatric Non-Hodgkin Lymphomas, M Brooke Bernhardt, Austin L Brown, Austyn T Grim, Michael E Scheurer, Nader Kim El-Mallawany, Nmazuo W Ozuah

Center for Medical Ethics and Health Policy Staff Publications

High-dose methotrexate (HD-MTX) with rigorous supportive care is essential to the treatment of pediatric non-Hodgkin lymphomas (NHL). We describe the safety and tolerability of HD-MTX in patients with NHL treated at our center. In our cohort of 46 patients, the majority had at least one course of delayed clearance and/or creatinine elevation. Additionally, more than one-third of patients experienced an episode of grade ≥3 mucositis. Creatinine elevations and delayed clearance were independently associated with subsequent grade ≥3 mucositis. We advocate for greater availability of methotrexate monitoring to allow dose escalation of this essential modality around the world.

Perceptions Of Various Treatment Approaches For Adults And Children With Misophonia, Eleanor E A Smith, Andrew G Guzick, Isabel A Draper, Jane Clinger, Sophie C Schneider, Wayne K Goodman, Jennifer J Brout, Marjin Lijffijt, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Objective: Misophonia is a complex disorder characterized by a heightened reaction to certain sounds and associated stimuli. While there is no uniformly accepted treatment to date, different intervention approaches are being investigated. Individual's perceptions of different misophonia treatment methods may affect compliance and satisfaction with treatment options. We sought to gather data on patient perceptions of currently available misophonia treatments.

Methods: Using an online survey, we collected data about treatment preferences, treatment usage, and diagnosis history from parents of children with misophonia (N = 141) and adults with misophonia (N = 252).

Results: Most respondents were not satisfied with misophonia …

Extracorporeal Membrane Oxygenation Outcomes In Children With Preexisting Neurologic Disorders Or Neurofunctional Disability, Siddhartha A Dante, Megan K Carroll, Derek K Ng, Ankur Patel, Philip C Spinella, Marie E Steiner, Laura L Loftis, Melania M Bembea

Center for Medical Ethics and Health Policy Staff Publications

Objective: Patient selection for pediatric extracorporeal membrane oxygenation (ECMO) support has broadened over the years to include children with pre-existing neurologic morbidities. We aimed to determine the prevalence and nature of pre-ECMO neurologic disorders or disability and investigate the association between pre-ECMO neurologic disorders or disability and mortality and unfavorable neurologic outcome.

Design: Multicenter retrospective observational cohort study.

Setting: Eight hospitals reporting to the Pediatric ECMO Outcomes Registry between October 2011 and June 2019.

Patients: Children younger than 18 years supported with venoarterial or venovenous ECMO.

Interventions: The primary exposure was presence of pre-ECMO neurologic disorders or moderate-to-severe disability, defined …

Primary Outcomes For Adults Receiving The Unified Protocol After Hurricane Harvey In An Integrated Healthcare Setting, Saira A Weinzimmer, Amy R Goetz, Andrew G Guzick, Lynn M Hana, Sandra L Cepeda, Sophie C Schneider, Sarah M Kennedy, Gifty N Amos Nwankwo, Catherine C Christian, Ashley M Shaw, Alison Salloum, Asim A Shah, Wayne K Goodman, Jill Ehrenreich-May, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

The Unified Protocol for Transdiagnostic Treatment of Emotional Disorders (UP) has demonstrated efficacy for treating anxiety and depression. However, there are limited effectiveness data when conducted in real-world settings with diverse populations, including those with trauma. We evaluated treatment outcomes in a naturalistic, community setting among 279 adults who received UP following Hurricane Harvey. We examined change in overall clinical severity, depression and anxiety symptoms, functional impairment, and baseline outcome predictors (i.e., demographic characteristics, impact from Hurricane Harvey, co-occurrence of depression and anxiety symptoms). Global clinical severity, depression and anxiety symptoms, and functional impairment decreased by end-of-treatment. Participants experienced global …

Two Specialists, Two Recommendations: Discordance Between Urologists' & Radiation Oncologists' Prostate Cancer Treatment Recommendations, Rebecca K Delaney, Brittany L Sisco-Taylor, Xuechen Wang, Karen Scherr, Peter A Ubel, Benjamin Haaland, Valerie C Kahn, Daniel Hamstra, John T Wei, Farrah Madanay, J Kelly Davis, Taylor U Greeno, Angela Fagerlin

Center for Medical Ethics and Health Policy Staff Publications

Objective: To examine the treatment recommendation patterns among urologists and radiation oncologists, the level of concordance or discordance between physician recommendations, and the association between physician recommendations and the treatment that patients received.

Method: The study was a secondary analysis of data from a randomized clinical trial conducted November 2010 to April 2014 (NCT02053389). Eligible participants were patients from the trial who saw both specialists. The primary outcome was physician recommendations that were scored using an adapted version of the validated PhyReCS coding system. Secondary outcomes included concordance between physician recommendations and the treatment patients received.

Results: Participants …

Incidence Trends Of Kaposi Sarcoma Among Young Non-Hispanic Black Men By Us Regions, 2001-2018, Ryan Suk, Donna L White, Sheena Knights, Ank Nijhawan, Ashish A Deshmukh, Elizabeth Y Chiao

Center for Medical Ethics and Health Policy Staff Publications

Despite the overall national decline in Kaposi sarcoma (KS) incidence in the United States among persons living with HIV, previous studies suggest there might be specific subgroups of the US population that are associated with higher KS incidence rates than others. Using the 2001-2018 National Program of Cancer Registries and Surveillance, Epidemiology, and End Results Program database, we assessed KS incidence trends among young men aged 20-34 years by race and ethnicity and geographic region. Statistical significance is 2-sided. The KS incidence rate increased nationally by 1.5% per year in non-Hispanic Black men, whereas the rate decreased statistically significantly by …

A Comparison Of Us Medicare Expenditures For Hemodialysis And Peritoneal Dialysis, Jennifer M Kaplan, Jingbo Niu, Vivian Ho, Wolfgang C Winkelmayer, Kevin F Erickson

Center for Medical Ethics and Health Policy Staff Publications

Background: Observations that peritoneal dialysis (PD) may be an effective, lower-cost alternative to hemodialysis for the treatment of ESKD have led to policies encouraging PD and subsequent increases in its use in the United States.

Methods: In a retrospective cohort analysis of Medicare beneficiaries who started dialysis between 2008 and 2015, we ascertained average annual expenditures (for up to 3 years after initiation of dialysis) for patients ≥67 years receiving in-center hemodialysis or PD. We also determined whether differences in Medicare expenditures across dialysis modalities persisted as more patients were placed on PD. We used propensity scores to match 8305 …

Challenges And Lessons Learned From The Rapid Operationalization Of A Prospective Cohort To Study The Natural History And Neurodevelopmental Outcomes Of Postnatal Zika Virus Infection Among Infants And Children In Rural Guatemala, Alejandra Paniagua-Avila, Daniel Olson, Amy Connery, D Mirella Calvimontes, Guillermo A Bolanos, Molly M Lamb, Desiree Bauer, Aida Ralda, Neudy Rojop, Eduardo Barrios, Andrea Chacon, Melissa Gomez, Paola Arroyave, Sara Hernandez, Maria Alejandra Martinez, Saskia Bunge-Montes, Alison Colbert, Kareen Arias, Garret Brazeale, Andrea Holliday, Kay M Tomashek, Hana M El Sahly, Wendy Keitel, Flor M Munoz, Edwin J Asturias

Center for Medical Ethics and Health Policy Staff Publications

During the course of the 2015-2017 outbreak of Zika virus (ZIKV) in the Americas, the emerging virus was recognized as a congenital infection that could damage the developing brain. As the Latin American ZIKV outbreak advanced, the scientific and public health community questioned if this newly recognized neurotropic flavivirus could affect the developing brain of infants and young children infected after birth. We report here the study design, methods and the challenges and lessons learned from the rapid operationalization of a prospective natural history cohort study aimed at evaluating the potential neurological and neurodevelopmental effects of postnatal ZIKV infection in …

Medicaid Expansion And Veterans' Reliance On The Va For Depression Care, Daniel Liaou, Patrick N O'Mahen, Laura A Petersen

Center for Medical Ethics and Health Policy Staff Publications

Background: In 2001, before the Affordable Care Act (ACA), some states expanded Medicaid coverage to include an array of mental health services, changing veterans' reliance on US Department of Veterans Affairs (VA) services.

Methods: Using Medicaid and VA administrative data from 1999 to 2006, we used a difference-in-difference design to calculate shifts in veterans' reliance on the VA for depression care in New York and Arizona after the 2 states expanded Medicaid coverage to adults in 2001. Demographically matched, neighbor states Pennsylvania and New Mexico/Nevada were used as paired comparisons, respectively. Fractional logit was used to capture the distribution of …