Wellbeing and quality of life among parents of individuals with Fontan physiology.

Purpose: To examine global and health-related quality of life (QOL) among parents of individuals with Fontan physiology and determine associations with sociodemographic, parent and child-related health, psychological, and relational factors.

Methods: Parents participating in the Australian and New Zealand Fontan Registry (ANZFR) QOL Study (N = 151, Parent Mean age = 47.9 ± 10.

The Influence of Project ECHO and Integrated Behavioral Health in Primary Care on Emergency Department Visits Among Youth Diagnosed with Depression.

Rates of depression among youth and emergency department (ED) visits for un- or under-treated symptoms are on the rise. Early identification and treatment of depression is imperative at the patient, program, system, and population levels. This paper examines the individual and cumulative impact of Project ECHO and the inclusion of IBH services in pediatric primary care practices on mental health-related ED rates among youth diagnosed with depression for those practices.

What dimensions of school climate promote adaptive functioning in adolescents with ADHD? A prospective longitudinal study.

Background: The study of ADHD has predominantly focused on individual-level risk-factors, and less is known about contextual factors that promote adaptive functioning.

Aims: The present study is the first to evaluate the longitudinal association between five dimensions of school climate (academic expectations, student engagement, disciplinary structure, respect for students, willingness to seek help) and student outcomes, and whether ADHD symptom severity moderates those associations.

Methods And Procedures: Participants included 274 adolescents (45 % female) who completed assessments in 8th (T1) and 10th (T2) grades.

Cognitive Disengagement Syndrome and Autism Traits are Empirically Distinct from each Other and from Other Psychopathology Dimensions.

Recently, an association between cognitive disengagement syndrome (CDS), formerly sluggish cognitive tempo, and autism has been documented, but it is not known if the association is due to overlapping autism and CDS traits or if CDS is empirically distinct from autism. Mothers rated 2,209 children 4-17 years (1,177 with autism, 725 with ADHD-Combined type, and 307 with ADHD-Inattentive type) on the Pediatric Behavior Scale. Factor analysis of the Pediatric Behavior Scale items indicated that CDS and autism traits are empirically distinct from each other without cross-loading and are distinct from eight other factors (attention deficit, impulsivity, hyperactivity, oppositional behavior, irritability/anger, conduct problems, depression, and anxiety).

Systematic Review of Pain Assessment Measures Used in Pediatric Acute Lymphoblastic Leukemia.

Background: Pain is a prevalent, frequent, and often persistent symptom among children with acute lymphoblastic leukemia (ALL). Despite its high prevalence, pain has remained understudied, and no evidence-based recommendations exist for how best to assess and treat pain in this population. Without proper assessment, clinical efforts to improve pain management in pediatric ALL will be ineffective.

Youth With Functional Abdominal Pain Disorders Have More Sleep Disturbances. A School-Based Study.

Background: There is a bidirectional relationship between sleep and pain disturbances. Sleep disturbances increase the risk for chronic pain, while chronic pain can interfere with sleep. Hence, we assessed the subjective sleep characteristics of youth with functional abdominal pain disorders (FAPDs) compared to healthy youth and examined associations with gastrointestinal symptoms.

Preventative treatment of tuberous sclerosis complex with sirolimus: Phase I safety and efficacy results.

Objective: Tuberous sclerosis complex (TSC) results from overactivity of the mechanistic target of rapamycin (mTOR). Sirolimus and everolimus are mTOR inhibitors that treat most facets of TSC but are understudied in infants. We sought to understand the safety and potential efficacy of preventative sirolimus in infants with TSC.

A pilot study of the utility of a hospital-based school program for pediatric patients with cardiac diagnoses.

Introduction: Pediatric patients with complex cardiac diagnoses are at increased risk for physical, cognitive, and developmental complications. Formalized school support [i.e.

Development of the iManage SCD mobile health application for transition.

Objective: This paper outlines the design and implementation of iManage SCD, a self-management mobile health application for adolescents and young adults (AYA) with sickle cell disease (SCD) during transition from pediatric to adult health care.

Methods: The Integrate, Design, Assess, Share (IDEAS) framework, emphasizing user insights, iterative design, rigorous assessment, and knowledge sharing, guided the development process. The design team consisted of researchers, psychologists, physicians, social workers, AYA with SCD, and parents of AYA with SCD (n = 16) across three states.

Self-Management assistance for recommended treatment (SMART) IBD app randomized control trial in adolescents with IBD: Design and methodology.

Aims: Adherence to medical regimens, including medications and appointments, is a significant concern for adolescent populations that warrants behavioral interventions. Negative health behaviors during adolescence can persist into adulthood and lead to long-term negative health outcomes. Due to the limited availability and resources for behavioral self-management intervention, many youth do not receive evidence-based behavioral care and continue to struggle with managing their illness.

Specialization of the brain for language in children with Fragile X Syndrome: a functional Near Infrared Spectroscopy study.

Specialization of the brain for language is early emerging and essential for language learning in young children. Fragile X Syndrome (FXS) is a neurogenetic disorder marked by high rates of delays in both expressive and receptive language, but neural activation patterns during speech and language processing are unknown. We report results of a functional Near Infrared Spectroscopy (fNIRS) study of responses to speech and nonspeech sounds in the auditory cortex in a sample of 2- to 10-year-old children with FXS and typically developing controls (FXS n = 23, TDC n = 15, mean age = 6.

Results from a Double-Blind, Randomized, Placebo-Controlled, Single-Dose, Crossover Trial of Lovastatin or Minocycline in Fragile X Syndrome.

Treatment studies in knockout rodent models have found that minocycline and lovastatin each improve synaptic, neurological, and behavioral functioning, and open-label chronic dosing studies in human patients with fragile X syndrome (FXS) have demonstrated modest clinical improvements. Findings from blinded studies are mixed, and there is a limited understanding of electrophysiological target engagement that would facilitate cross-species translational studies. Smaller-scale, acute (e.

Radiation of pain: psychophysical evidence for a population coding mechanism in humans.

The spread of pain across body locations remains poorly understood but may provide important insights into the encoding of sensory features of noxious stimuli by populations of neurons. In this psychophysical experiment, we hypothesized that more intense noxious stimuli would lead to spread of pain, but more intense light stimuli would not produce perceptual radiation. Fifty healthy volunteers (27 females, 23 males, ages 14-44 years) participated in this study wherein noxious stimuli (43, 45, 47, and 49°C) were applied to glabrous (hand) and hairy skin (forearm) skin with 5-second and 10-second durations.

Validity of Cognitive Disengagement Syndrome with Mother and Father Ratings of Brazilian Children: Replication of Northern Hemisphere Findings in South America.

Although the Child and Adolescent Behavior Inventory (CABI) cognitive disengagement syndrome (CDS) scale has demonstrated validity relative to the CABI attention-deficit/hyperactivity disorder-inattention (ADHD-IN) scale with parent ratings of youth from North America, Europe, East Asia, and Central Asia, no study has evaluated the validity of the 15 symptom CDS scale with children from South America. Our purpose was to examine for the first time the validity of the CABI CDS scale with Brazilian children. Latent variable modeling procedures were used to examine the validity of CDS scores.

Barriers to Medication Adherence in People Living With Epilepsy.

Background And Objectives: Epilepsy affects approximately 1.2% of the US population, resulting in 3.4 million Americans with active epilepsy.

Elexacaftor/tezacaftor/ivacaftor and mental health: A workshop report from the Cystic Fibrosis Foundation's Prioritizing Research in Mental Health working group.

Background: This report summarizes the 2023 inaugural annual meeting of the Cystic Fibrosis Foundation's Prioritizing Research in Mental Health (PRIME) working group. This workshop focused on mental health and elexacaftor/tezacaftor/ivacaftor (ETI).

Methods: We reviewed existing literature and identified key gaps and study design considerations in preclinical work, pharmacokinetics/pharmacodynamics, mood/anxiety, quality of life/self-perception, neuropsychological symptoms, sleep, and symptom management.

MELACARE Nurse-led follow-up after early-stage melanoma: protocol and feasibility.

Background And Purpose: We developed the Melacare nurse-led intervention, which combines education in skin self-examination as a resource-conscious approach to detecting recurrence and management of fear of cancer recurrence in patients treated for melanoma. This publication presents the Melacare study protocol and evaluates the feasibility and acceptability of Melacare prior to a larger randomised controlled trial.

Material And Methods: Feasibility and acceptability of Melacare were evaluated in an intervention-only feasibility study, in which patients attended two nurse-led intervention sessions coupled with an educational booklet.

Neurodevelopmental follow-up care pathways and processes for children with congenital heart disease in Australia.

Background: International consensus exists for neurodevelopmental follow-up care of children with congenital heart disease (CHD) to support timely intervention for developmental delays. Yet, documentation of how this care is implemented in Australia is lacking. This study aimed to identify, categorise, and understand care pathways and services supporting neurodevelopmental follow-up of Australian children with CHD.

Pregnancy care experiences for adults with congenital heart disease in the United States.

Background: Research to reduce maternal morbidity due to cardiovascular disease is vitally important in the United States, especially for the growing number of individuals with congenital heart disease (CHD) reaching childbearing age. Understanding patient experiences through patient engagement is critical to designing research that is aligned with the needs of adults with CHD undergoing pregnancy.

Methods: This patient engagement project, grounded in human centered design, focuses on the discovering patient and healthcare provider priorities for reducing maternal morbidity in CHD through patient centered outcomes research (PCOR).

Missed Opportunities for Intervening Early in Preschoolers with Developmental Concern: Perspectives From Head Start Parents, Teachers, and Healthcare Providers.

Objective: The purpose of this study was to discover the care meanings of facilitators and barriers to detection and intervention for developmental delay among Head Start preschool-aged children, as viewed by parents, teachers, and primary care providers.

Methods: We used a qualitative focus group design and broad cultural lens to understand similarities and differences in family and professional care, as Head Start programs educate preschoolers living in poverty who are disproportionately from ethno-racial minoritized groups. We sought the perspectives of 15 Head Start parents equally representing Black, Latino(a), and White parents, 17 teachers, and 11 healthcare providers to discover facilitators and barriers to adherence with professional recommendations.

Increasing Follow-up for Adolescents With Depressive Symptoms.

Background: Prompt follow-up for positive depression screen results is important in providing high-quality care for adolescents. We sought to improve follow-up within 30 days for adolescents (≥12 years) with Patient Health Questionnaire-9 scores ≥10, or those with a positive question 9, from 25% to 40%.

Methods: We conducted a quality improvement project at 6 primary care locations serving ∼33,300 patients (70% Black, 7.

Telehealth regulating together pilot trial: emotion regulation intervention for autistic children and adolescents.

Introduction: Autistic children and adolescents frequently experience emotion dysregulation, or difficulties with appropriately modifying their emotional reactions. Caregivers of autistic teens frequently seek psychotherapy support for navigating challenges associated with emotion dysregulation. During the COVID-19 pandemic, access to clinical services became limited, with interventions halted or transitioned into a telehealth format.

Addressing Mental Health and Social Needs in Tandem to Promote Health Equity.

Compelling evidence shows that social risks and mental health are intertwined. Pediatric clinicians can maximize the effectiveness of interventions that address mental health concerns by incorporating social risks and social needs screening and interventions. Approaches that elevate the interconnectedness of social risks and mental health require (a) an understanding of the multi-level contextual factors that contribute to patient and family functioning; and (b) a culturally responsive and multidisciplinary clinical practice that targets contextual factors.