Health care transition recommendations for young people with intellectual and developmental disabilities and co-occurring mental health conditions: Stakeholder survey findings.

Background: Limited knowledge exists as to the supports and services young people with IDD and co-occurring mental health conditions need to transition to adult-focused health care and adulthood.

Methods: The survey findings presented were part of a larger investigation that explored these service and supports needs obtained from 144 respondents. Data reported for this investigation were obtained from 144 respondents who answered the question, "What do you think would be most helpful to assist young people with IDD and mental health conditions with the transition from child to adult health care (not including mental health care)?"Qualitative analysis based upon the social-ecological model was undertaken.

The 123s and affective, behavioral, and cognitives of unaccompanied Latinx Minors: A trauma-informed composite case study.

Objectives: This article explores the stages where trauma is experienced (123s) and its physiopsychological impact (affect, behavior, and cognitions [ABCs]) in unaccompanied Latinx Minors through the analysis of a composite case study. Unaccompanied Latinx Minors represent a unique and growing population in the United States that warrants careful consideration from a trauma-informed and resilience-based framework.

Method: A detailed case study was implemented, triangulating caregiver and client therapy records to illustrate the framework of stages of trauma exposure (123s) and physiopsychological impact (ABCs).

Barriers to Mental Health Care Transition for Youth and Young Adults with Intellectual and Developmental Disabilities and Co-occurring Mental Health Conditions: Stakeholders' Perspectives.

Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates.

Enhancing access to early intervention by including parent navigators with lived experience in a pediatric medical home.

Introduction: A growing number of children have developmental delay (DD) or intellectual and developmental disabilities (IDD), and early intervention (EI) can improve their developmental trajectory. However, access to EI is fraught with disparities. This article describes the development of Parent Navigator (PN) program that placed three parents with lived experience in a pediatric medical home to serve as community health workers to provide support to families with a child with DD or IDD to access EI and other needed resources.

Educator Perspectives on Grief-Sensitive Training During the COVID-19 Pandemic in US Public Schools.

Background: Grief and loss are common experiences for children and adolescents, particularly during the COVID-19 pandemic. Educators feel unprepared to support grieving students due to lack of training. We studied educator experiences receiving grief-sensitive training as part of the grief-sensitive schools initiative (GSSI), which provides grief-sensitive training, online video-based and print resources, and a financial grant to schools and school districts for use in supporting grieving students.

Exploratory study of the provision of academic and health-related accommodations to transition-age adolescents and emerging adults with spina bifida.

Purpose: The purpose of this exploratory study was to investigate the types of academic and health-related accommodations provided to adolescents and emerging adults with spina bifida aged 9-20 years.

Methods: Data were extracted from the paper and electronic records of transition-age youth enrolled in the study. Four open ended items involved content analysis.

Risk factors for unanticipated hospitalizations in children and youth with spina bifida at an urban children's hospital: A cross-sectional study.

Background: Spina bifida (SB) is a condition resulting from the improper closure of the neural tube and vertebral column during fetal development. While patients' life expectancy and quality of life have improved dramatically due to medical advances, children continue to experience health-related issues that often require hospitalizations.

Objective: The association among sociodemographic and clinical characteristics with potentially preventable hospitalizations (PPH) in children and youth with myelomeningocele type SB was investigated in this cross-sectional study.

Health Care Transition Planning: Educational Needs of Pediatric Nurses and Pediatric Nurse Practitioners.

Introduction: The purpose was to identify the educational needs of pediatric nurses and pediatric nurse practitioners providing direct care to transition-aged youth with chronic illness and disability and to identify strategies to develop health care transition planning (HCTP) expertise.

Method: Mixed-methods descriptive analyses were performed on survey data extracted from a larger national study exploring the provision of HCTP activities performed by nurses of two pediatric nursing professional organizations.

Results: Items querying educational needs were completed by 1,162 pediatric nurses serving in advanced practice and staff roles.

Factors Affecting Compliance with Diabetic Retinopathy Screening: A Qualitative Study Comparing English and Spanish Speakers.

Purpose: The purpose of this study was to understand individual-, social-, and system-level factors that affect compliance with recommended diabetic retinopathy (DR)-evaluations, and how these factors vary between English and Spanish speakers.

Patients And Methods: We conducted a qualitative study using semi-structured interviews. Study subjects included Kaiser Permanente Southern California members with type II diabetes mellitus at least aged 26 years who spoke English or Spanish.

A report from the NIHR UK working group on remote trial delivery for the COVID-19 pandemic and beyond.

Background: Prior to the COVID-19 pandemic, the majority of clinical trial activity took place face to face within clinical or research units. The COVID-19 pandemic resulted in a significant shift towards trial delivery without in-person face-to-face contact or "Remote Trial Delivery". The National Institute of Health Research (NIHR) assembled a Remote Trial Delivery Working Group to consider challenges and enablers to this major change in clinical trial delivery and to provide a toolkit for researchers to support the transition to remote delivery.

Oro-mucosal midazolam maleate: Use and effectiveness in adults with epilepsy in the UK.

Background: Oro-mucosal midazolam maleate (OMM) with suitable training to family and carers is being increasingly recognized as the treatment of choice to mitigate the development of status epilepticus in non-hospital community settings. There are no studies to describe the use, effectiveness, and suitable dosing of OMM in adults with epilepsy in community settings.

Purpose: To describe the use, effectiveness, and dosing of OMM in the emergency treatment of epileptic seizures in community settings.

Health Care Transition: The Struggle to Define Itself.

Health care transition is an expanding field of health care practice and research focused on facilitating adolescents and emerging adults with long-term conditions to transfer uninterruptedly from pediatric to adult health care services and to transition successfully into adulthood and beyond. There is a widespread need to develop and implement service models as approximately one million adolescents and emerging adults with long-term conditions transfer their care into the adult system and enter adulthood. The purpose of this article is to explore major issues associated with the current state of health care transition practice, research and ultimately policymaking and systems change.

Reconsidering reviews: the role of scoping reviews in digital medicine and pediatrics.

Digital health is a rapidly developing field which is positioned to transform the manner in which healthcare is delivered, especially amongst adolescents and young adults. In order to assess the efficacy of novel medical devices, clinicians and researchers often turn to the literature for guidance. Randomized control trials and the systematic reviews and meta-analyses that they inform are considered to be at the top of the evidence hierarchy.

Eslicarbazepine acetate response in intellectual disability population versus general population.

Background: A quarter of people with intellectual disability (ID) have epilepsy, compared to approximately one in a hundred across the general population. Evidence for the safe and effective prescribing of antiepileptic drugs (AEDs) for those with ID is, however, limited.

Aims Of Study: This study seeks to strengthen the research evidence around Eslicarbazepine Acetate (ESL), a new AED, by comparing response of individuals with ID to those from the general population who do not have ID.

Psychosocial outcomes for adults with spina bifida: a scoping review protocol.

Objective: The objective of this scoping review is to explore the evidence on psychosocial needs and related outcomes for adults with spina bifida.

Introduction: Individuals with spinal bifida have complex service needs that can lead to the emergence of secondary conditions and health complications, which can result in serious, life-threatening illnesses. While much is known about the biological impact of spina bifida, there is a dearth of information regarding its psychological and social impact.

Racial/ethnic minority children recently placed in the child welfare system: the impact of sociodemographic, medical and mental health factors on overweight /obesity.

Children in the child welfare system have greater rates of obesity and are more prone to overweight/obesity as adults compared to other children. There is limited research on how ecological, biological and developmental factors impact the trajectory of overweight/obesity in this group. This retrospective study examined these factors among children entering the child welfare system.

European perspective of perampanel response in people with Intellectual Disability.

Background: Epilepsy prevalence is over 20% for those with ID. It is difficult to diagnose and treat and more likely to be treatment resistant. The evidence informing prescribing is sparse, particularly for new drugs such as perampanel (PMP).

Lacosamide in the general population and in people with intellectual disability: Similar responses?

Purpose: Epilepsy prevalence is significantly higher in people with Intellectual Disability (ID) compared to people with epilepsy (PWE) from the general population. Increased psychological and behavioural problems, healthcare costs, morbidity, mortality and treatment resistance to antiepileptic drugs (AEDs) is associated with epilepsy in ID populations. Prescribing AEDs for PWE and ID is challenging and influenced heavily by studies conducted with the general population.

Exploring epilepsy attendance at the emergency department and interventions which may reduce unnecessary attendances: A scoping review.

Background: Repeat attendances to emergency departments for seizures, impacts on the individual and burdens health care systems. We conducted a review to identify implementable measures which improve the management of people with epilepsy reducing healthcare costs and their supportive evidence.

Methods: A scoping review design using suitable search strategy as outlined by PRISMA-ScR was used to examine seven databases: MEDLINE, EMBASE, CINAHL, AMED, PsychINFO, HMIC and BNI.

An exploratory study of adolescents and emerging adults with spina bifida knowledge of their individual education program: Implications for health care transition planning.

Purpose: The purpose of this study was to explore adolescents and emerging adults (AEA) with spina bifida (SB) understanding of their Individualized Education Program (IEP) and to identify factors related to their knowledge about their own IEP.

Methods: Data were collected from January 2015 to July 2016 from 79 adolescents with SB. A ten-item questionnaire including demographics and questions specifically addressing IEPs was used.

Safely surrendered infants in Los Angeles County: A medically vulnerable population.

Background: As a means to provide safety for a population at great risk of harm through abandonment, every state in the United States now has laws and practices for the safe relinquishment of newborns and infants. However, there is no national database tracking the population of infants surrendered through such programmes, and few states monitor these numbers. The primary aim of this study was therefore to examine the descriptive characteristics of infants who have been safely surrendered in a large, socio-economically diverse urban area.

Satisfaction, Salaries, and Sustainability: Results of a National Survey of Pediatric Program Directors.

Objective: Describe the career and work environment of pediatric program directors (PDs) and associated factors, including salary disparities and long-term career plans.

Methods: A national, anonymous, electronic survey was sent to all categorical residency PD members of the Association of Pediatric Program Directors. Surveys assessed PD demographics, characteristics of the residency program and PD positions (including salary), and measures of satisfaction.

Understanding Facilitators and Barriers to Care Transitions: Insights from Project ACHIEVE Site Visits.

Background: Care transitions between clinicians or settings are often fragmented and marked by adverse events. To increase patient safety and deliver more efficient and effective health care, new ways to optimize these transitions need to be identified. A study was conducted to delineate facilitators and barriers to implementation of transitional care services at health systems that may have been adopted or adapted from published evidence-based models.