Frequency and reasons that parents decline genetic testing for critically ill neonates.

Purpose: Current literature reports strong support among parents for genetic testing for ill neonates; yet, some parents decline this testing for unknown reasons. We aimed to document the proportion of parents who decline, describe their clinical and demographic characteristics, and categorize their rationales.

Methods: We reviewed medical records to collect and compare clinical and demographic information for patients whose parents consented to and declined recommended genetic testing.

Long-Term Effect of Intensive vs Standard Blood Pressure Control on Mild Cognitive Impairment and Probable Dementia in SPRINT.

Background And Objectives: The Systolic Blood Pressure Intervention Trial suggested that intensive lowering of systolic blood pressure (SBP) decreases the risk of developing dementia. However, an insufficient number of probable dementia cases stemming from the trial's early termination made results inconclusive. The goal of this study was to estimate the effect of intensive vs standard SBP lowering on the longer term incidence of cognitive impairment leveraging extended follow-up for cognitive status.

Genetic Test Utilization and Cost among Families of Children Evaluated for Genetic Conditions: An Analysis of USA Commercial Claims Data.

Introduction: Healthcare payers in the USA increasingly cover genetic testing, including exome sequencing (ES), for pediatric indications. Analysis of claims data enables understanding of utilization and costs in real-world settings. The objective of this study was to describe genetic test utilization, diagnostic outcomes, and costs for children who received ES as well as for those who received less comprehensive forms of genetic testing, along with their families.

Associations Between Deficit Accumulation Frailty and Baseline Markers of Lifestyle in the US POINTER Trial.

Background: Multidomain lifestyle interventions may have the potential to slow biological aging as captured by deficit accumulation frailty indices. We describe the distribution and composition of the 49-component frailty index (FI) developed by the U.S.

Integrating parent voices into research at the extremes of prematurity: what are we doing and where should we go?

When a baby is born premature, a landscape of potential problems replaces an imagined future. Outcomes become the measures of success. Researchers are recognizing that we need the direct input of parents to select meaningful outcomes.

The Complex Relationship Between Social and Functional Needs in Frail Older Adults.

Background: There has been a growing interest in integrating social and function-focused care into health care settings. Little is known about what older adults perceive as the needs that impact their lives, and the resources to address patients' social and functional needs often exist outside of traditional health care settings.

Methods: Our objective was to understand frail older adults' and community organizations' perspectives on what social and functional needs impact older adults' health, the support they receive, and how organizations and health systems could partner to address these needs.

Promoting serious illness conversations in primary care through telehealth among persons living with cognitive impairment.

Background: serious illness conversations (SIC), particularly for persons living with cognitive impairment (PLCI), inconsistently happen in primary care. Pragmatic, scalable strategies are needed to promote SIC for PLCI.

Design: Pragmatic, prospective single-arm pilot study that occurred between July 1, 2021 and May 30, 2022 across seven primary care practices in North Carolina.

Beyond the Question: Reexamining a Parent's Unusual Request.

Pediatricians sometimes think about medical ethics as the field of determining right and wrong in in answering difficult moral questions that occur at the bedside. But an emphasis on rapidly determining right and wrong when faced with ethical dilemmas can lead clinicians to miss important issues underlying both the question and their approach to answering it. We argue that ethical reflection is not merely a process of getting to the right answer but also a way to probe beyond the original question to better understand the stakeholders' perspectives and priorities.

Childhood outcomes following discharge from a referral bronchopulmonary dysplasia program.

Objectives: The primary objective of this study was to profile the childhood health, development, and health-related quality of life (HR QoL) for children with the most severe bronchopulmonary dysplasia (BPD), those discharged from a quaternary referral program.

Study Design: We collected cross-sectional data through telephone interviews with 282 families of children ages 18 months to 11 years who had been discharged from a BPD referral program.

Results: Respiratory morbidities were near universal, with 42% of children ever having required a tracheostomy and severity of these morbidities correlated with parent-reported health and QoL.

Insights into the regulation of malate dehydrogenase: inhibitors, activators, and allosteric modulation by small molecules.

Cellular metabolism comprises a complex network of biochemical anabolic and catabolic processes that fuel the growth and survival of living organisms. The enzyme malate dehydrogenase (MDH) is most known for its role in oxidizing malate to oxaloacetate (OAA) in the last step of the tricarboxylic acid (TCA) cycle, but it also participates in the malate-aspartate shuttle in the mitochondria as well as the glyoxylate cycle in plants. These pathways and the specific reactions within them are dynamic and must be carefully calibrated to ensure a balance between nutrient/energy supply and demand.

Sentinel report of uniquely paired collision tumors: glioblastoma multiforme and coexistent intraventricular subependymoma. Illustrative case.

Background: The presence of intracranial collision tumors, histologically distinct tumors occurring in anatomical proximity, is quite rare. Herein, the authors describe the sentinel case of a contiguous collision tumor combination consisting of glioblastoma multiforme and intraventricular subependymoma.

Observations: A 67-year-old male presented with several months of progressive fatigue superimposed on more recently noted word-finding difficulty, slight left-sided weakness, and episodic confusion.

Continuous Glucose Monitoring in Older Adults: What We Know and What We Have Yet to Learn.

Objective: To assess the growing use of continuous glucose monitoring (CGM) systems by older adults and explore additional areas integration that could benefit adults with frailty.

Background: The use of CGM devices has expanded rapidly in the last decade. This has been supported by substantial data showing significant benefit in glycemic metrics: hemoglobin A1c improvements, less hypoglycemia, and improved quality of life.

Experimental biology can inform our understanding of food insecurity.

Food insecurity is a major public health issue. Millions of households worldwide have intermittent and unpredictable access to food and this experience is associated with greater risk for a host of negative health outcomes. While food insecurity is a contemporary concern, we can understand its effects better if we acknowledge that there are ancient biological programs that evolved to respond to the experience of food scarcity and uncertainty, and they may be particularly sensitive to food insecurity during development.

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.

Direct and Indirect Care of Patients With Multiple Sclerosis: Burden on Providers and Impact of Portal Messages.

Background: Multiple sclerosis (MS) indirect patient-care time is often underreported and uncompensated. Data on time spent on indirect and direct care by MS providers is lacking.

Methods: A survey was designed to understand the practice patterns among MS providers in the United States, including time spent on direct and indirect patient care, as well as managing electronic medical record portal messages.

The Association Between an Electronic Health Record (EHR)-Embedded Frailty Index and Patient-Reported Outcomes Among Patients with Metastatic Non-Small-Cell Lung Cancer on Immunotherapy: A Brief Report.

: While frailty is a well-established predictor of overall mortality among patients with metastatic non-small cell lung cancer (mNSCLC), its association with patient-reported outcomes is not well-characterized. The goal of this study was to examine the association between an electronic frailty index (eFI) score and patient-reported outcome measures along with prognostic awareness among patients with mNSCLC receiving immunotherapy. : In a cross-sectional study, patients with mNSCLC who were on immunotherapy completed the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC-QLQ-C30) and the National Cancer Institute Patient Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).

The Association of Frailty and Neighborhood Disadvantage with Emergency Department Visits and Hospitalizations in Older Adults.

Background: Risk stratification and population management strategies are critical for providing effective and equitable care for the growing population of older adults in the USA. Both frailty and neighborhood disadvantage are constructs that independently identify populations with higher healthcare utilization and risk of adverse outcomes.

Objective: To examine the joint association of these factors on acute healthcare utilization using two pragmatic measures based on structured data available in the electronic health record (EHR).

Using a Patient Educational Video to Improve Knowledge of Maternal Mortality Warning Signs: A Randomized Controlled Trial.

Objective: To determine whether a community-informed, language-concordant postpartum video education campaign, developed with community input, improves patients' knowledge of warning signs for postpartum maternal mortality (infection, hemorrhage, hypertensive disorders, and postpartum depression) compared with routine discharge procedures.

Methods: A single-center, investigator-blinded, parallel-group randomized controlled trial of postpartum individuals who delivered at a large, urban, tertiary care hospital. Eligible participants were enrolled and completed a baseline knowledge questionnaire.