Knowledge gaps in heart and lung donation after the circulatory determination of death: Report of a workshop of the National Heart, Lung, and Blood Institute.

In a workshop sponsored by the U.S. National Heart, Lung, and Blood Institute, experts identified current knowledge gaps and research opportunities in the scientific, conceptual, and ethical understanding of organ donation after the circulatory determination of death and its technologies.

Ethical and Legal Issues Surrounding Genetic Testing in the NICU.

Clinicians practicing in a modern NICU are noticing an increase in the proportion of patients who undergo genetic testing as well as changes in the types of genetic testing patients receive. These trends are not surprising given the increasing recognition of the genetic causes of neonatal illness and recent advances in genetic technology. Yet, the expansion of genetic testing in the NICU also raises a number of ethical questions.

Disparities Persist Among Hispanic Patients: Completing Evaluation, Waitlisting, and Receiving a Kidney Transplant.

Background: Hispanic patients receive disproportionately fewer kidney transplants (KT) than non-Hispanic White (NHW) patients. In this observational study, we evaluated disparities in completing evaluation steps to KT among Hispanic patients.

Methods: Using medical records of Hispanic and NHW patients initiating evaluation at 4 transplant centers from January 2011 to March 2020, we performed sequential Cox models to compare Hispanic versus NHW patients reaching each step of the evaluation process until receiving a KT.

A case report of terbinafine-induced acute generalized exanthematous pustulosis in a striking photodistributed pattern.

Acute generalized exanthematous pustulosis is a rare severe cutaneous adverse reaction that classically presents in intertriginous or flexural areas and subsequently spreads diffusely across the trunk and extremities. To date, few cases of acute generalized exanthematous pustulosis arising in a photodistributed pattern are documented. Herein, we describe the second known case of photodistributed generalized exanthematous pustulosis arising in association with oral terbinafine use, providing a summary of the previously documented cases along with exploration of the potential pathophysiological mechanisms for this cutaneous reaction.

Development of a culturally targeted chatbot to inform living kidney donor candidates of African ancestry about APOL1 genetic testing: a mixed methods study.

Clinical chatbots are increasingly used to help integrate genetic testing into clinical contexts, but no chatbot exists for Apolipoprotein L1 (APOL1) genetic testing of living kidney donor (LKD) candidates of African ancestry. Our study aimed to culturally adapt and assess perceptions of the Gia® chatbot to help integrate APOL1 testing into LKD evaluation. Ten focus groups and post-focus group surveys were conducted with 54 LKDs, community members, and kidney transplant recipients of African ancestry.

Vanderbilt Mini-PROM-Breast for Breast Reconstruction: A Short-Form, Patient-Reported Outcomes Measure.

Background: Breast reconstruction procedures are among the most commonly performed plastic surgery operations. Although there are well-validated patient-reported outcomes measures (PROMs) for breast reconstruction, there are several patient-, provider-, and service-level barriers to their implementation in routine clinical settings. Therefore, we developed a short-form PROM to evaluate breast reconstruction outcomes.

Can evidence drive health equity in the COVID-19 pandemic and beyond?

Using scoping review methods, we systematically searched multiple online databases for publications in the first year of the pandemic that proposed pragmatic population or health system-level solutions to health inequities. We found 77 publications with proposed solutions to pandemic-related health inequities. Most were commentaries, letters, or editorials from the USA, offering untested solutions, and no robust evidence on effectiveness.

Validation of the Moral Injury Outcome Scale in acute care nurses.

Introduction: Moral injury, predominantly studied in military populations, has garnered increased attention in the healthcare setting, in large part due to the psychological and emotional consequences of the COVID-19 pandemic. The measurement of moral injury with instrumentation adapted from military settings and validated by frontline healthcare personnel is essential to assess prevalence and guide intervention. This study aimed to validate the Moral Injury Outcome Scale (MIOS) in the population of acute care.

Transplant Nephrologists' Preferences for Clinical Decision Support for APOL1 Genetic Testing of Living Kidney Donors: A Focus Group Study.

Key Points: Opportunities exist for clinical decision support (CDS) to help transplant nephrologists counsel living donors receiving () genetic test results. CDS for genetic test results should provide access to patient education materials and reminders at follow-up appointments. Optimal CDS would notify providers when results are available, provide information on follow-up appointments, and provide access to patient education materials.

Integrating participants as partners in research governance and operations: an approach from the Research Program Engagement Core.

Objectives: During the last two decades, researchers and funders increasingly recognised the value of engaging patients and communities in research. Despite progress, community engagement remains challenging. There are few examples of successful participant engagement in governance of large-scale research programmes.

A Passing Problem: Evaluating Harm and Benefit in Autism Research.

Autism research frequently seeks to evaluate interventions or inform their development. Unfortunately, researchers often assume that autism intervention should reduce autistic traits, effectively setting as a goal of treatment that autistic people attempt to "pass" as nonautistic. A growing body of evidence highlights serious potential harms from passing demands.

Public Perceptions and Informational Needs Regarding Surgical Residents.

Objective: Identify what topics are of most interest to patients regarding surgical residents.

Design: Survey of general public describing a hypothetical surgery and then assessing comfort level with resident involvement in surgery, reactions to disclosure statements regarding resident involvement, and desires for additional information. This data was used to produce an amended statement about surgical residents and their involvement in a hypothetical surgery to determine the impact of increased information on participant comfort.

The True Cost of Antitransgender Legislation.

A large body of research finds that sexual and gender minorities experience disparities in health equity that stem from structural discrimination. In particular, transgender and gender diverse (TGD) patients face barriers in access to gender-affirming care (GAC). As of December 2021, 35 state legislatures have introduced >100 bills that categorically deny TGD individuals' human rights and outlaw medically necessary GAC.

Public Health Risks, Dermatological Manifestations, and Environmental Justice Associated With Vinyl Chloride Exposure: Narrative Review.

Background: Environmental vinyl chloride (VC) exposure may result in serious acute and chronic dermatological conditions. Because existing literature largely focuses on exposures in occupational settings, a gap persists in our understanding of the medical consequences of large-scale chemical spills.

Objective: This study aims to examine the potential dermatological manifestations of VC exposure in the context of industrial spills and other environmental disasters and to highlight the public health and justice implications of such releases.

A report of disseminated actinic granuloma: An unusually extensive presentation.

In this report, a case of disseminated actinic granuloma in a 50-year-old female with type 2 diabetes mellitus is described. This case is unique due to the unusually extensive cutaneous involvement of the face, neck, trunk, and extremities at initial presentation. The lesions were in a striking photo-distribution, highlighting ultraviolet light as an important environmental trigger for this process.

Overcoming refusal of treatment in pediatric cancer without legal involvement: A descriptive case series from interviews with pediatric oncologists.

To describe strategies that pediatric oncologists utilize to persuade families to initiate or continue chemotherapy after refusing treatment, we examined transcripts from interviews of oncologists with relevant experience. We identified three cases in which the pediatric oncologists' approaches led to voluntary acceptance of recommended treatment without legal intervention. Strategies used include direct communication with alternative medicine providers, time-limited trial of alternative therapy, and praying with the family.

Ethical and Psychosocial Factors in the Decision-Making and Informed Consent Process for Upper Extremity Vascularized Composite Allotransplantation: A Mixed-Methods Study.

Unlabelled: Although upper extremity (UE) vascularized composite allotransplantation (VCA) aims to improve quality of life, relatively few have been performed worldwide to support evidence-based treatment and informed decision-making.

Methods: We qualitatively examined factors contributing to anticipated and actual decision-making about UE VCA and perceptions of the elements of informed consent among people with UE amputations, and UE VCA candidates, participants, and recipients through in-depth interviews. Thematic analysis was used to analyze qualitative data.

Patient definitions of transplant success in upper extremity vascularized composite allotransplantation: A mixed-methods study.

Objective: Upper extremity vascularized composite allotransplantation is an innovative treatment option for people with upper extremity amputations. Limited patient-relevant long-term outcomes data about transplant success may impede patients' informed treatment decision-making. We assessed perceptions of what constitutes upper extremity vascularized composite allotransplantation success among individuals with upper extremity amputations.

Intellectual conflicts of interest among cardiology and pulmonology clinical practice guidelines.

Background: Intellectual conflicts of interest (COI), like financial COI, may threaten the validity and trustworthiness of clinical practice guidelines (CPGs). However, comparatively little is known about intellectual COI in CPGs. This study sought to estimate the prevalence of intellectual COI and corresponding management strategies among cardiology and pulmonology CPGs.

Complex Patient Perspectives on Evolving Diverticulitis Treatment Patient Perspectives on Diverticulitis.

Background: Despite evidence that antibiotics may not be necessary to treat acute uncomplicated diverticulitis, they remain the mainstay of treatment in the United States. A randomized controlled trial evaluating antibiotic effectiveness could accelerate implementation of an antibiotic-free treatment strategy, but patients may be unwilling to participate.

Objective: This study aims to assess patients' attitudes regarding participation in a randomized trial of antibiotics versus placebo for acute diverticulitis, including willingness to participate.

Studying the impact of translational genomic research: Lessons from eMERGE.

Two major goals of the Electronic Medical Record and Genomics (eMERGE) Network are to learn how best to return research results to patient/participants and the clinicians who care for them and also to assess the impact of placing these results in clinical care. Yet since its inception, the Network has confronted a host of challenges in achieving these goals, many of which had ethical, legal, or social implications (ELSIs) that required consideration. Here, we share impediments we encountered in recruiting participants, returning results, and assessing their impact, all of which affected our ability to achieve the goals of eMERGE, as well as the steps we took to attempt to address these obstacles.