Bioethics and Medical Ethics Commons^™

Ethical, Legal, And Social Issues In Metaverse-Enabled Healthcare, Kristin M Kostick-Quenet, Vasiliki Rahimzadeh

Center for Medical Ethics and Health Policy Staff Publications

Metaverse is heralded by some as the next iteration of the internet. It offers three-dimensional, immersive virtual spaces, where users, represented as avatars, can synchronously work, play, interact, and transact. Initially developed within the realm of massive multiplayer online role-playing games, the metaverse now extends into sectors such as music, entertainment, retail, real estate, and, more recently, healthcare. Users engage in the metaverse using augmented reality or virtual reality (AR/VR) headsets that interoperate with other sensory devices to integrate biofeedback and multimodal data streams.1 In this article, the authors offer a conceptual synthesis and anticipatory policy analysis grounded in …

Talking About Suffering In The Intensive Care Unit, Brent M Kious, Judith B Vick, Peter A Ubel, Olivia Sutton, Jennifer Blumenthal-Barby, Christopher E Cox, Deepshikha Ashana

Center for Medical Ethics and Health Policy Staff Publications

Background: Some have hypothesized that talk about suffering can be used by clinicians to motivate difficult decisions, especially to argue for reducing treatment at the end of life. We examined how talk about suffering is related to decision-making for critically ill patients, by evaluating transcripts of conversations between clinicians and patients' families.

Methods: We conducted a secondary qualitative content analysis of audio-recorded family meetings from a multicenter trial conducted in the adult intensive care units of five hospitals from 2012-2017 to look at how the term "suffering" and its variants were used. A coding guide was developed by consensus-oriented discussion …

Investigative Genetic Genealogy Practices Warranting Policy Attention: Results Of A Modified Policy Delphi, Christi J Guerrini, Louiza Kalokairinou, Jill O Robinson, Whitney Bash Brooks, Stephanie M Fullerton, Sara Huston, Jacklyn Dahlquist, Diana Madden, Norah Crossnohere, Nicola Campoamor, John F P Bridges, Amy L Mcguire

Center for Medical Ethics and Health Policy Staff Publications

A technique known as investigative genetic genealogy (IGG) was first introduced to criminal investigations in 2018, and it has since been used by U.S. law enforcement to help identify hundreds of criminal perpetrators and unidentified human remains. As expertise in IGG grows, policymakers have shown interest in regulating it. To help inform these efforts and to promote coherence in IGG governance as it expands, we recruited experts representing a spectrum of IGG-relevant professions and perspectives to identify and prioritize IGG practices for policy attention and to develop policy options for addressing them. In two rounds of a modified policy Delphi, …

Survivorship From Pediatric And Adult Brain Tumors: The 2024 Brain Tumor Epidemiology Consortium Meeting Report, Scott L Coven, Roberta Mckean-Cowdin, Michael E Scheurer, Kimberly J Johnson, Luc Bauchet, Carol Kruchko, Ching C Lau, Quinn T Ostrom, John Villano, Yan Yuan, Friederike Erdmann

Center for Medical Ethics and Health Policy Staff Publications

The Brain Tumor Epidemiology Consortium (BTEC) is an international organization with membership of individuals from the scientific community with interests related to brain tumor epidemiology, including surveillance, classification, methodology, etiology, and factors associated with morbidity and survival. The 2024 annual BTEC meeting entitled “Survivorship from Pediatric and Adult Brain Tumors” was held in Mainz, Germany, USA, on May 15–17, 2024. The meeting gathered scientists from Africa, Australia, Europe, and North America and included 4 keynote sessions focusing on brain tumor survivorship across the age spectrum. The meeting included 3 abstract sessions, which also included scientific talks around brain …

Reframing Stigma In Tourette Syndrome: An Updated Scoping Review, Kelly Pring, Melina Malli, Brandy W Hardy, Stephen R Rapp, Eric A Storch, Jonathan W Mink, Jaclyn M Martindale

Center for Medical Ethics and Health Policy Staff Publications

Persistent tic disorders (PTD) such as Tourette's syndrome (TS) are common childhood-onset neurodevelopmental disorders. Stigmatization of individuals with these disorders remains an ongoing problem. The purpose of this scoping review is to serve as an updated review of the research regarding stigmatization in youth with PTD since the publication of the original systematic review about this topic in 2016. The electronic databases Embase, Web of Science, PubMed, PsycINFO, and CINAHL were searched. Of the 4751 initial articles screened after removing duplications, 47 studies met the inclusion criteria. The studies were examined under the social-ecological stigmatization model, which helps categorize stigmatization …

Patient-Centric Federated Learning: Automating Meaningful Consent To Health Data Sharing With Smart Contracts, Kristin M Kostick-Quenet, Marcelo Corrales Compagnucci, Mateo Aboy, Timo Minssen

Center for Medical Ethics and Health Policy Staff Publications

Federated Learning (FL) promises to enhance data-driven health research by enabling collaborative machine learning across distributed datasets without direct data exchange. However, current FL implementations primarily reflect the data-sharing interests of institutional controllers rather than those of individual patients whose data are at stake. Existing consent mechanisms-like broad consent under HIPAA or explicit consent under the GDPR-fail to provide patients with control over how their data is used. This article explores the integration of smart contracts (SCs) into FL as a mechanism for automating, enforcing, and documenting consent in data transactions. SCs, encoded in decentralized ledger technologies, can ensure that …

Deep Brain Stimulation For Childhood Treatment-Resistant Obsessive-Compulsive Disorder: Mental Health Clinician Views On Candidacy Factors, Ilona Cenolli, Tiffany A Campbell, Natalie Dorfman, Meghan Hurley, Jared N Smith, Kristin Kostick-Quenet, Eric A Storch, Jennifer Blumenthal-Barby, Gabriel Lázaro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Deep brain stimulation (DBS) is approved under a humanitarian device exemption to manage treatment-resistant obsessive-compulsive disorder (TR-OCD) in adults. It is possible that DBS may be trialed or used clinically off-label in children and adolescents with TR-OCD in the future. DBS is already used to manage treatment-resistant childhood dystonia. Evidence suggests it is a safe and effective intervention for certain types of dystonia. Important questions remain unanswered about the use of DBS in children and adolescents with TR-OCD, including whether mental health clinicians would refer pediatric patients for DBS, and who would be a good candidate for DBS.

Objectives: …

The Ethical Contributions Of Nudges To Healthcare, Ian Doherty

Electronic Theses and Dissertations

“The Ethical Contributions of Nudges to Healthcare” examines the ethical use, implications, and rationale for using nudges in healthcare. The use of nudges in healthcare are being empirically examined. This leaves much to be examined from the ethical perspective. To examine the ethical perspective, the dissertation lays out how nudges interact with and enhance the biomedical principles of autonomy and beneficence. The dissertation then turns to clinical ethics. Nudges, more specifically the framing effect, are paired with trust in the patient-physician relationship to discern how best to aid a patient in his or her medical decision-making. The dissertation then investigates …

Learning To Be An Autistic Therapist: Personal Steps Towards An Autism-Affirming Psychotherapy, Sasha D. Strong

Ought: The Journal of Autistic Culture

How can Autistic therapists understand and support themselves, and how can this help them support their clients? In this paper, I recount my personal journey of healing and growth as an Autistic psychotherapist, 16 months after self-identification. Here is an overview of conceptual frameworks from #actuallyautistic authors, critical theory, queer theory, and social justice that I have found helpful. I also share some of the therapeutic and wellness approaches that have been important to me, including mindfulness and bodyfulness. Organic knowing has been pivotal for me in discerning between masking and aliveness, and regaining a choice around masking behaviors. This …

Health Equity Innovation In Precision Medicine: Data Stewardship And Agency To Expand Representation In Clinicogenomics, Patrick J Silva, Vasiliki Rahimzadeh, Reid Powell, Junaid Husain, Scott Grossman, Adam Hansen, Jennifer Hinkel, Rafael Rosengarten, Marcia G Ory, Kenneth S Ramos

Center for Medical Ethics and Health Policy Staff Publications

Most forms of clinical research examine a very minute cross section of the patient journey. Much of the knowledge and evidence base driving current genomic medicine practice entails blind spots arising from underrepresentation and lack of research participation in clinicogenomic databases. The flaws are perpetuated in AI models and clinical practice guidelines that reflect the lack of diversity in data being used. Participation in clinical research and biobanks is impeded in many populations due to a variety of factors that include knowledge, trust, healthcare access, administrative barriers, and technology gaps. A recent symposium brought industry, clinical, and research participants in …

The Living Document, Camilla Lyckblad

Proceedings from the Document Academy

This physical interactive art piece of thesis research in progress aims to deepen comprehension of information behavior in clinical contexts, where the contemporary medical record, with its increasing digital properties such as open record access for patients, can be viewed as an entity that both listens and influences. The art piece sheds light on the complex dynamics of truth within clinical environments, where patients and healthcare professionals might selectively disclose or withhold information, aiming to protect both patient, clinician and the information itself. Set within a small, dimly lit room, the exhibit features eight aged medical records, each inscribed with …

Food Security And Its Impact On Hypertension In Urban Communities, Lauren M. Nobriga

Master's Projects and Capstones

The Quality Improvement Team proposed an intervention to increase enrollment in the Food Security Program, a six-month initiative that provides vouchers redeemable for fruits and vegetables. Long-term impacts of this Program include an improved food economy and enhanced patient disease management autonomy. This project aimed to increase the percentage of eligible adult medicine clinic patients enrolled in the Food Security Program by 25%, or 11 patients per month, based on the mean enrollment for the first four months of the Program (May to August) of nine patients. The intervention was based on bi-monthly performance reports, making the goal include enrolling …

What Patients And Caregivers Want To Know When Consenting To The Use Of Digital Behavioral Markers, Anika Sonig, Christine Deeney, Meghan E Hurley, Eric A Storch, John Herrington, Gabriel Lázaro-Muñoz, Casey J Zampella, Birkan Tunc, Julia Parish-Morris, Jenny Blumenthal-Barby, Kristin Kostick-Quenet

Center for Medical Ethics and Health Policy Staff Publications

Artificial intelligence (AI)-based computational tools for deriving digital behavioral markers are increasingly able to automatically detect clinically relevant patterns in mood and behavior through algorithmic analysis of continuously and passively collected data. The integration of these technologies into clinical care is imminent, most notably in clinical psychology and psychiatry but also other disciplines (e.g., cardiology, neurology, neurosurgery, pain management). Meanwhile, ethical guidelines for implementation are lacking, as are insights into what patients and caregivers want and need to know about these technologies to ensure acceptability and informed consent. In this work, we present qualitative findings from interviews with 40 adolescent …

The Challenge Of Regulating Pharmaceutical Clinical Trials In The 21st Century With A Focus On Guatemala, Alejandro Cerón, Antonio Ricafort, Carter Saccocio, Maria Delmonte, Jordan Vasquez, Amarri Bishop, Julia Atwood, Addison Bucsko, Jordan Lewis, Alexandra Welch, Itzael Garcia, Ella Wald, Selena Johnson, Crystal Jin, Talya Riciputi, Lindsey Speer, Vanessa Udo-Obong, Soren Engberg, Tessa Lindstrom

Anthropology: Undergraduate Student Scholarship

This report was prepared by the students and instructor of the "Right to Health in Theory and Practice" class taught in the fall of 2024 at the University of Denver. The report was prepared for the Vice Ministry of Health Regulation, Surveillance and Control of the Ministry of Public Health and Social Assistance of Guatemala. The work used the following guiding question: What can a country like Guatemala do to regulate international pharmaceutical clinical trials in the context of research commercialization? In other words, the work was guided by three important elements. First, the regulatory aspect of clinical trials. Second, …

Inflammation Mediated By Gut Microbiome Alterations Promotes Lung Cancer Development And An Immunosuppressed Tumor Microenvironment, Zahraa Rahal, Yuejiang Liu, Fuduan Peng, Sujuan Yang, Mohamed A Jamal, Manvi Sharma, Hannah Moreno, Ashish V Damania, Matthew C Wong, Matthew C Ross, Ansam Sinjab, Tieling Zhou, Minyue Chen, Inti Tarifa Reischle, Jiping Feng, Chidera Chukwuocha, Elizabeth Tang, Camille Abaya, Jamie K Lim, Cheuk Hong Leung, Heather Y Lin, Nathaniel Deboever, Jack J Lee, Boris Sepesi, Don L Gibbons, Jennifer A Wargo, Junya Fujimoto, Linghua Wang, Joseph F Petrosino, Nadim J Ajami, Robert R Jenq, Seyed Javad Moghaddam, Tina Cascone, Kristi Hoffman, Humam Kadara

Center for Medical Ethics and Health Policy Staff Publications

Accumulating evidence indicates that the gut microbiome influences cancer progression and therapy. We recently showed that progressive changes in gut microbial diversity and composition are closely coupled with tobacco-associated lung adenocarcinoma in a human-relevant mouse model. Furthermore, we demonstrated that the loss of the antimicrobial protein Lcn2 in these mice exacerbates protumor inflammatory phenotypes while further reducing microbial diversity. Yet, how gut microbiome alterations impinge on lung adenocarcinoma development remains poorly understood. In this study, we investigated the role of gut microbiome changes in lung adenocarcinoma development using fecal microbiota transfer and delineated a pathway by which gut microbiome alterations …

Excess Mortality In Persons With Concurrent Hiv And Cancer Diagnoses: A Retrospective Cohort Study, Kamaria L Lee, Varada Sarovar, Jennifer O Lam, Wendy A Leyden, Stacey E Alexeeff, Alexandra N Lea, Rulin C Hechter, Haihong Hu, Julia L Marcus, Qing Yuan, Jennifer R Kramer, Lilie L Lin, Elizabeth Y Chiao, William J Towner, Michael A Horberg, Michael J Silverberg

Center for Medical Ethics and Health Policy Staff Publications

Background: With extended lifespans for people with human immunodeficiency virus (PWH), there is a corresponding increased burden of chronic illnesses, including cancer. Our objective was to estimate the excess mortality among PWH with cancer compared with people without HIV (PWoH), accounting for the higher background mortality in the general PWH population.

Methods: We identified 39,000 PWH and 387,767 demographically matched PWoH in three integrated healthcare systems from 2000 to 2016. We estimated excess mortality among PWH with cancer, computed as the cancer mortality rate difference-in-difference comparing PWH and PWoH. We evaluated five cancer groups: any cancer; virus-, human papillomavirus-, and …

Metagenomic Sequencing For Early Detection Of Future Engineered Pandemics: Foreshadowing The Privacy Challenge, Nir Eyal, Bridget Williams, Kevin M. Esvelt, Jane R. Bambauer

UF Law Faculty Publications

In this commentary, we imagine how a global system of metagenomic sequencing could be governed in order to reap the benefits and manage the risks. Global institutional engineers and their academic partners would need to develop a new governance model to ensure that all partners involved in a global metagenomic surveillance system cooperate as needed.

Association Of Common And Rare Variants With Alzheimer’S Disease In More Than 13,000 Diverse Individuals With Whole-Genome Sequencing From The Alzheimer’S Disease Sequencing Project, Wan-Ping Lee, Seung Hoan Choi, Margaret G Shea, Po-Liang Cheng, Beth A Dombroski, Achilleas N Pitsillides, Nancy L Heard-Costa, Hui Wang, Katia Bulekova, Amanda B Kuzma, Yuk Yee Leung, John J Farrell, Honghuang Lin, Brian W Kunkle, Adam Naj, Elizabeth E Blue, Frederick Nusetor, Dongyu Wang, Eric Boerwinkle, William S Bush, Xiaoling Zhang, Philip L De Jager, Josée Dupuis, Lindsay A Farrer, Myriam Fornage, Eden Martin, Margaret Pericak-Vance, Sudha Seshadri, Ellen M Wijsman, Li-San Wang, Alzheimer's Disease Sequencing Project, Gerard D Schellenberg, Anita L Destefano, Jonathan L Haines, Gina M Peloso

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Alzheimer's disease (AD) is a common disorder of the elderly that is both highly heritable and genetically heterogeneous.

Methods: We investigated the association of AD with both common variants and aggregates of rare coding and non-coding variants in 13,371 individuals of diverse ancestry with whole genome sequencing (WGS) data.

Results: Pooled-population analyses of all individuals identified genetic variants at apolipoprotein E (APOE) and BIN1 associated with AD (p < 5 × 10-8). Subgroup-specific analyses identified a haplotype on chromosome 14 including PSEN1 associated with AD in Hispanics, further supported by aggregate testing of rare coding and non-coding variants in the region. Common variants in LINC00320 were observed associated with AD in Black individuals (p = 1.9 × 10-9). Finally, we observed rare non-coding variants in the promoter of TOMM40 distinct of APOE in pooled-population analyses (p = 7.2 × 10-8).

Discussion: We observed that complementary pooled-population and subgroup-specific analyses offered unique insights into the genetic architecture of AD.

Highlights: We determine the association of genetic variants with Alzheimer's disease (AD) using …

Implementing And Assessing Climate Change Education In A Pediatrics Residency Curriculum, Mark Mcshane, Shelley Kumar, Linessa Zuniga

Center for Medical Ethics and Health Policy Staff Publications

Background For physicians to effectively combat the growing health crisis that is climate change, they should begin learning during medical training about its health implications. However, there is little data on residents' knowledge of the climate crisis, and even less data regarding the effectiveness and acceptability of climate change education in graduate medical training programs. Objective To incorporate a new educational session on the health implications of climate change into a residency curriculum and evaluate the acceptability of the session and its effects on residents' knowledge, attitudes, and perceptions of the topic.

Methods In July 2021, a 90-minute, interactive, small-group …

Langerhans Cell Histiocytosis In Children Born After Assisted Reproductive Technology, Carrie L Williams, Kathryn J Bunch, Charles Stiller, Michael F G Murphy, Beverley J Botting, Melanie C Davies, Barbara Luke, Philip J Lupo, Alastair G Sutcliffe

Center for Medical Ethics and Health Policy Staff Publications

Research question: Are children born after assisted reproductive technology (ART) at higher risk of developing Langerhans cell histiocytosis (LCH)?

Design: Records of children born after ART recorded by the UK Human Fertilisation & Embryology Authority were linked to National Registry of Childhood Tumours records to determine the number of children developing LCH. Calculated person-years at risk were used in conjunction with the incidence of LCH in the general population to determine the expected number of cases if the cohort had the same incidence as the general population with similar age and sex, over the same calendar years. The standardized incidence …

Incorporating An Analytical Approach To Ethical Reasoning Into An Ethics Case Conference For Residents, Holland Kaplan, Alyssa Kahl, Jonathan Lim

Center for Medical Ethics and Health Policy Staff Publications

Educating residents to apply ethical principles in clinical practice is critical in achieving standards in professionalism. We implemented biweekly ethics morning report case conferences incorporating a validated analytical tool in medical ethics, the Four-Box Method, from July 2022 to June 2023 in our internal medicine residency program. In 24 ethics morning reports, over 73% of participants reported that the intervention helped them achieve each of three learning objectives in ethics education. Ninety-two percent of cases addressed > 1 ethical issue. Our intervention may be easily integrated into the morning report conference structure as an educational tool in medical ethics across internal …

Mortalidad Por Cirrosis En Guatemala 2018: Patrones E Inequidades, Cristian Ramírez, Luis Pablo Méndez-Alburez, María Fernanda Piedrasanta, Alejandro Cerón

Anthropology: Faculty Scholarship

El presente estudio busca analizar la mortalidad por cirrosis en Guatemala. El propósito es identificar posibles criterios epidemiológicos que orienten la priorización de acciones de salud pública. El riesgo de morir por cirrosis en Guatemala muestra marcadas desigualdades por departamento, las cuales son mayores al comparar por municipio. El riesgo de morir es también más alto en hombres, en personas mestizas o ladinas, en niveles educativos bajos, y en personas que se dedican a ocupaciones elementales. Las medidas de salud pública orientadas a los municipios y grupos en mayor riesgo son de suma importancia para la prevención de muerte por …

An Analysis Of The Environmental Account Of Obesity As A Form Of Financial Neo-Imperialism, Zahara Alzubaidi

The Cardinal Edge

Socioeconomic developments of the past half-century have created mass social concern over an “obesity epidemic.” This concern is given a sense of legitimacy by studies that warn of a totally obese America in only a few decades, and children being more likely than ever to be diagnosed with Type 2 Diabetes. The “environmentalist account” of obesity asserts that factors like genetics, food availability, and social or political climate are the major determinants of an “obesogenic environment” – that is, an environment of obese adults likely to raise obese children. Some feminist thinkers argue that the environmentalist account is necessary to …

Ethical Issues In Implementation Science: Perspectives From A National Heart, Lung, And Blood Institute Workshop, Neal W Dickert, Donna Spiegelman, Jennifer S Blumenthal-Barby, Garth Graham, Steven Joffe, Jeremy M Kahn, Nancy E Kass, Scott Y H Kim, Meeta P Kerlin, Aisha T Langford, James V Lavery, Daniel D Matlock, Kathleen N Fenton, George A Mensah

Center for Medical Ethics and Health Policy Staff Publications

Ethical issues arise in the context of implementation science that may differ from those encountered in other research settings. This report, developed out of a workshop convened by the Center for Translation Research and Implementation Science within the United States National Heart, Lung, and Blood Institute, identifies six key themes that are important to the assessment of ethical dimensions of implementation science. First, addressing ethical challenges in implementation science does not require new ethical principles, commitments, or regulations. However, it does require understanding of the specific contexts arising in implementation research related to both study design and the intervention being …

Update On Recommendations For Cancer Screening And Surveillance In Children With Genomic Instability Disorders, Yoshiko Nakano, Roland P Kuiper, Kim E Nichols, Christopher C Porter, Harry Lesmana, Julia Meade, Christian P Kratz, Lucy A Godley, Luke D Maese, Maria Isabel Achatz, Payal P Khincha, Sharon A Savage, Andrea S Doria, Mary-Louise C Greer, Vivian Y Chang, Lisa L Wang, Sharon E Plon, Michael F Walsh

Center for Medical Ethics and Health Policy Staff Publications

Genomic instability disorders are characterized by DNA or chromosomal instability, resulting in various clinical manifestations, including developmental anomalies, immunodeficiency, and increased risk of developing cancers beginning in childhood. Many of these genomic instability disorders also present with exquisite sensitivity to anticancer treatments such as ionizing radiation and chemotherapy, which may further increase the risk of second cancers. In July 2023, the American Association for Cancer Research held the second Childhood Cancer Predisposition Workshop, where multidisciplinary international experts discussed, reviewed, and updated recommendations for children with cancer predisposition syndromes. This article discusses childhood cancer risks and surveillance recommendations for the group …

Knowledge, Attitudes, And Concerns About Psilocybin And Mdma As Novel Therapies Among Us Healthcare Professionals, Erin Wang, David S Mathai, Natalie Gukasyan, Sandeep Nayak, Albert Garcia-Romeu

Center for Medical Ethics and Health Policy Staff Publications

Psychedelic-assisted therapy (PAT) with substances like psilocybin and MDMA has shown promise for conditions including depression and post-traumatic stress disorder. Psilocybin and MDMA may become approved medicines in the coming decade. This study assessed knowledge and attitudes regarding PAT among 879 U.S. healthcare professionals via anonymous online survey. Multivariable linear regression was used to identify predictors of openness to clinical use. Most participants (71.2%) were female and White (85.8%), with a mean (SD) age of 45.5 (12.7) years. Registered nurses (25.4%) and physicians (17.7%) comprised the largest professional groups. Respondents endorsed strong belief in therapeutic promise, and moderate openness to …

Genetic Variants In Canonical Wnt Signaling Pathway Associated With Pediatric Immune Thrombocytopenia, Taylor Olmsted Kim, Jennifer M Geris, Jonathan M Flanagan, Rachael F Grace, Michele P Lambert, Candelaria O'Farrell, Melissa J Rose, Kristin A Shimano, Omar Niss, Cindy Neunert, Taizo A Nakano, Derek Macmath, Bogdan Dinu, Susan E Kirk, Ellis J Neufeld, Jenny M Despotovic, Michael E Scheurer, Amanda B Grimes

Center for Medical Ethics and Health Policy Staff Publications

Through the use of genetic sequencing, molecular variants driving autoimmunity are increasingly identified in patients with chronic and refractory immune cytopenias. With the goal of discovering genetic variants that predispose to pediatric immune thrombocytopenia (ITP) or increase risk for chronic disease, we conducted a genome-wide association study in a large multi-institutional cohort of pediatric patients with ITP. A total of 591 patients were genotyped using an Illumina Global Screening Array BeadChip. Six variants met genome-wide significance in comparison between children with ITP and a cohort of healthy children. One variant in NAV2 was inversely associated with ITP (adjusted odds ratio …

Tumor-Associated Edema In Children With Kaposi Sarcoma: 14 Years' Experience At Kamuzu Central Hospital, Lilongwe, Malawi, Fatsani Rose Manase, Allison Silverstein, William Kamiyango, Jimmy Villiera, Clement Dziwe, Claudia Wallrauch, Tom Heller, Mark Zobeck, Tamiwe Tomoka, Michael E Scheurer, Carl E Allen, Nmazuo Ozuah, Rizine Mzikamanda, Nader Kim El-Mallawany, Casey L Mcatee

Center for Medical Ethics and Health Policy Staff Publications

Background/objectives: Kaposi sarcoma (KS) is a common lymphatic endothelial cancer among children with and without HIV in central and eastern Africa. Despite its clinical heterogeneity, its various clinical phenotypes are often grouped together in staging and treatment algorithms. Patients with KS tumor-associated edema, referring to hard, non-pitting lesions which often lead to chronic disability, represent a unique, understudied subgroup of children with KS. To continue our work defining the distinct phenotypes of pediatric KS, this study aimed to assess the clinical progression and outcomes of KS edema in children.

Methods: A retrospective cohort study was conducted at Kamuzu Central Hospital …

Pancreatitis Pain Quality Changes At Year 1 Follow-Up, But Gp130 Remains A Biomarker For Pain, Jami L Saloman, Kristofer Jennings, Kimberly Stello, Shuang Li, Anna Evans Phillips, Kristen Hall, Evan L Fogel, Santhi Swaroop Vege, Dana K Andersen, William E Fisher, Christopher E Forsmark, Phil A Hart, Stephen J Pandol, Walter G Park, Mark D Topazian, Stephen K Van Den Eeden, Jose Serrano, Darwin L Conwell, Liang Li, Dhiraj Yadav

Center for Medical Ethics and Health Policy Staff Publications

Background/objectives: Debilitating abdominal pain is a common symptom affecting patients with chronic pancreatitis (CP). CP pain is dynamic due to multiple underlying mechanisms. The objective of this study was to 1) evaluate changes in pain phenotype at one year follow-up and 2) validate putative pain biomarkers in a prospective cohort study.

Methods: The Neuropathic and Nociceptive PROMIS-PQ questionnaires were used to classify pain for participants with in the PROCEED study. Putative serum biomarkers were measured via immunoassay.

Results: At enrollment, 17.6 % (120/681) subjects with CP reported no pain in the previous year. Of those, 29 % experienced pain during …

Measuring Perceived Utility Of Genomic Sequencing: Development And Validation Of The Genetic Utility (Gene-U) Scale For Adult Screening, Hadley Stevens Smith, Caryn Kseniya Rubanovich, Jill Oliver Robinson, Ariel N Levchenko, Sarah A Classen, Janet Malek, Adam H Buchanan, Barbara Biesecker, Kyle B Brothers, Benjamin S Wilfond, Christine Rini, Cinnamon S Bloss, Amy L Mcguire, Sara J Knight

Center for Medical Ethics and Health Policy Staff Publications

Purpose: As population-based screening programs to identify genetic conditions in adults using genomic sequencing (GS) are increasingly available, validated patient-centered outcome measures are needed to understand participants' experience. We aimed to develop and validate an instrument to assess the perceived utility of GS in the context of adult screening.

Methods: Informed by a 5-domain conceptual model, we used a 5-step approach to instrument development and validation: (1) item writing, (2) cognitive testing, (3) pilot testing and item reduction, (4) psychometric testing, and (5) evaluation of construct validity. Adults undergoing risk-based or population-based GS who had received GS results as part …