Shared Decision-Making at the Intersection of Disability, Culture, and Language Accessibility: An Educational Session for Medical Students.

Introduction: People with disabilities and those with non-English language preferences have worse health outcomes than their counterparts due to barriers to communication and poor continuity of care. As members of both groups, people who are Deaf users of American Sign Language have compounded health disparities. Provider discomfort with these specific demographics is a contributing factor, often stemming from insufficient training in medical programs.

An Expanded Approach to the Ascertainment of Children and Youth With Special Health Care Needs.

Objective: To describe the prevalence, characteristics, and health-related outcomes of children with diagnosed health conditions and functional difficulties who do not meet criteria for having a special health care need based on the traditional scoring of the Children with Special Health Care Needs (CSHCN) Screener.

Methods: Data come from the 2016 to 2021 National Survey of Children's Health (n = 225 443). Child characteristics and health-related outcomes were compared among 4 mutually exclusive groups defined by CSHCN Screener criteria and the presence of both conditions and difficulties.

A Quality Improvement Network for Interdisciplinary Training in Developmental Disabilities.

Children with developmental disabilities (DD), such as autism spectrum disorder (ASD), have complex health and developmental needs that require multiple service systems and interactions with various professionals across disciplines. The growing number of children and youth identified with ASD or DD, including anxiety and depression, has increased demand for services and need for highly qualified pediatric providers. Federally funded Leadership Education in Neurodevelopmental and related Disabilities (LEND) programs across the United States address today's health care shortages by providing comprehensive, interdisciplinary training to providers from multiple pediatric disciplines who screen, diagnose, and treat those with ASD and DD.

Newborn screening for neurodevelopmental diseases: Are we there yet?

In the US, newborn screening (NBS) is a unique health program that supports health equity and screens virtually every baby after birth, and has brought timely treatments to babies since the 1960's. With the decreasing cost of sequencing and the improving methods to interpret genetic data, there is an opportunity to add DNA sequencing as a screening method to facilitate the identification of babies with treatable conditions that cannot be identified in any other scalable way, including highly penetrant genetic neurodevelopmental disorders (NDD). However, the lack of effective dietary or drug-based treatments has made it nearly impossible to consider NDDs in the current NBS framework, yet it is anticipated that any treatment will be maximally effective if started early.

Quality of Life and Well-Being for Children and Youth With Special Health Care Needs and their Families: A Vision for the Future.

Objectives: To fulfill the promise of a life of dignity, autonomy, and independence for children and youth with special health care needs (CYSHCN) and their families, greater value must be assigned to meaningful outcomes, such as quality of life and well-being.

Methods: Despite decades of research, programs, and measurements addressing quality of life and well-being for CYSHCN and their families, there still is no consensus on how to measure, implement, or achieve them.

Results: As the US health care system strives to reach the health care goals of safe, efficient, effective, equitable, timely, and patient-centered care, youth and families must be equal partners at all levels of the health care system-from clinical decision making to designing and implementing programs and policies.

Aiming High: Monitoring Population Level Indicators of Child Wellbeing as a Goal of Community-Academic Partnerships.

Introduction: Community-academic partnerships (CAPs) aim to improve neighborhood population health. Though measuring the impact of partnership activities at a population level can be difficult, evaluating indicators of wellbeing may increase understanding of how communities benefit from CAPs. This study examined child health indicators over time in two low-income, predominantly Black/African American and Hispanic communities where partnerships between an academic child development center and community coalitions were formed with the intention of improving child well-being.

Medical Student Choices Regarding Ventilator Allocation for People With Disabilities.

In the COVID-19 pandemic, concerns exist that ventilator triage policies may lead to discrimination against people with disabilities. This study evaluates whether preclinical medical students demonstrate bias towards people with disabilities during an educational ventilator-allocation exercise. Written student responses to a triage simulation activity were analyzed to describe ventilator priority rankings and to identify themes regarding disability.

Ethics Education in COVID-19: Preclinical Medical Students' Approach to Ventilator Allocation.

Introduction COVID-19 has confronted clinicians with a potential need to ration ventilators. There is little guidance for training medical students to make such decisions in future practice. How students would make ventilator triage decisions remains unknown.

Assessment of Disparities Associated With a Crisis Standards of Care Resource Allocation Algorithm for Patients in 2 US Hospitals During the COVID-19 Pandemic.

Importance: Significant concern has been raised that crisis standards of care policies aimed at guiding resource allocation may be biased against people based on race/ethnicity.

Objective: To evaluate whether unanticipated disparities by race or ethnicity arise from a single institution's resource allocation policy.

Design, Setting, And Participants: This cohort study included adults (aged ≥18 years) who were cared for on a coronavirus disease 2019 (COVID-19) ward or in a monitored unit requiring invasive or noninvasive ventilation or high-flow nasal cannula between May 26 and July 14, 2020, at 2 academic hospitals in Miami, Florida.

COVID-19 Trial Enrollment for Those Who Cannot Consent: Ethical Challenges Posed by a Pandemic.

The current coronavirus disease 2019 (COVID-19) pandemic has triggered an intense global research effort to inform the life-saving work of frontline clinicians who need reliable information as soon as possible. Yet research done in pressured circumstances can lead to ethical dilemmas, especially for vulnerable research subjects. We present the case of a child with neurocognitive impairment who is diagnosed with COVID-19 infection after presenting with fever and a seizure.

Foundation of the Newborn Screening Translational Research Network and its tools for research.

In the past 20 years, several policy activities were undertaken that shaped today's newborn screening (NBS) programs and their associated NBS research activities: the Newborn Screening Task Force Report; the Child Health Act of 2000, Screening for Heritable Disorders; the American College of Medical Genetics and Genomics' (ACMG's) Newborn Screening Uniform Panel; and the ACMG expert panel to examine the development of a national collaborative study system for rare genetic diseases. These activities helped conceptualize the Newborn Screening Translational Research Network (NBSTRN) infrastructure and lay the foundation for its current activities. After 10 years, NBSTRN has grown into an organization that provides tools and resources for researchers to conduct research relevant to NBS programs for rare diseases for which data has been siloed locally.

Should Foreigners Get Costly Lifesaving Treatments in the United States?

Many foreign parents bring their children to the United States for medical treatments that are unavailable in their own country. Often, however, parents cannot afford expensive treatments. Doctors and hospitals then face a dilemma.

Whose Odyssey Is It? Family-Centered Care in the Genomic Era.

Despite a century of progress in medical knowledge, many diagnostic odysseys end in disappointment, especially when the child has a developmental disorder. In cases of autism and intellectual disability, relatively few children receive a specific diagnosis, and virtually none of those diagnoses lead to a specific medical treatment. Whole-genome or -exome sequencing offers a quantum leap in the diagnostic odyssey, in that we will always learn something from sequencing-sometimes much more than families bargained for, as discussed elsewhere in this special report.

Including ELSI research questions in newborn screening pilot studies.

Background: The evidence review processes for adding new conditions to state newborn screening (NBS) panels rely on data from pilot studies aimed at assessing the potential benefits and harms of screening. However, the consideration of ethical, legal, and social implications (ELSI) of screening within this research has been limited. This paper outlines important ELSI issues related to newborn screening policy and practices as a resource to help researchers integrate ELSI into NBS pilot studies.

The Interprofessional/Family-Centered-Care Observation Rubric (I-FOR): Results of a Multicenter Study of a New Measure of Educational Outcomes.

Introduction The ability to provide family-centered care (FCC) and the ability to work in interprofessional care teams (IPC) are essential educational outcomes in graduate training programs. Lack of standardized measures leave programs to rely on idiosyncratic methods to monitor outcomes. We developed a faculty observation tool as part of an effort to create a national quality improvement database.

An Ethical Conflict Between Parents and Clinician in a Child with a Language Delay.

A developmental-behavioral pediatrician evaluated a 2-year-old child for developmental delays. He determined that the child had mild expressive language delays; the child had an intelligible vocabulary of 20 words and at least 20 other words that he said unclearly. He said a few contracted 2-word phrases, such as "gimme" and "its ok.

Newborn screening for X-linked adrenoleukodystrophy: evidence summary and advisory committee recommendation.

The secretary of the US Department of Health and Human Services in February 2016 recommended that X-linked adrenoleukodystrophy (X-ALD) be added to the recommended uniform screening panel for state newborn screening programs. This decision was informed by data presented on the accuracy of screening from New York, the only state that currently offers X-ALD newborn screening, and published and unpublished data showing health benefits of earlier treatment (hematopoietic stem cell transplantation and adrenal hormone replacement therapy) for the childhood cerebral form of X-ALD. X-ALD newborn screening also identifies individuals with later-onset disease, but poor genotype-phenotype correlation makes predicting health outcomes difficult and might increase the risk of unnecessary treatment.