The optimal system of care for the management of delayed sleep onset in adult ADHD in the UK: a modified Delphi consensus.

Introduction: Sleep-related disorders affect a significant number of individuals with ADHD, the most common of which has been found to be delayed sleep phase syndrome/delayed sleep onset. The presence of a sleep disorder can exacerbate ADHD symptoms and impair cognitive functions. Despite the significance of these issues, they are often overlooked, potentially leading to unsafe self-medication practices and illicit substance abuse.

Melatonin use in typically developing (TD) children: International Pediatric Sleep Association (IPSA) Expert Consensus Recommendations for Healthcare Providers.

Although melatonin is widely used globally for the management of insomnia in children and adolescents, there are few clinical guidelines available for healthcare practitioners, particularly in typically developing (TD) children. Because existing data are either sparse or inconclusive, a task force comprised of pediatric sleep researchers and clinicians was established by the International Pediatric Sleep Association (IPSA) to first examine the available literature and to then develop a set of evidence-based (when possible) and consensus-based recommendations to guide practitioners in decision-making regarding melatonin use in pediatric insomnia. The following recommendations regarding appropriate indications for melatonin in children, considerations regarding timing and dosage, safety issues and caveats in recommending use of melatonin in pediatric clinical settings, are presented as a companion to a Technical Report summarizing the available literature.

Melatonin use in managing insomnia in typically developing (TD) children: A technical report.

Although melatonin is widely used globally for the management of insomnia in children and adolescents, there are few clinical guidelines available for healthcare practitioners, particularly in typically developing (TD) children. Because existing data are either sparse or inconclusive, a task force comprised of pediatric sleep researchers and clinicians was established by the International Pediatric Sleep Association (IPSA) to first examine the available literature and to develop a set of evidence-based (when possible) and consensus-based recommendations to guide practitioners in decision-making regarding melatonin use in pediatric insomnia. A summary of the evidence pertaining to melatonin's use in pediatric clinical settings, and efficacy and safety in TD children is presented below as a companion to an accompanying list of specific recommendations.

Quality of melatonin use in children and adolescents: findings from a UK clinical audit.

Background: Melatonin is commonly used to treat sleep disturbance in children and adolescents, although uncertainties about its optimal use remain.

Objective: To determine to what extent prescribing of melatonin complies with evidence-based clinical practice standards.

Methods: As part of a quality improvement programme, the Prescribing Observatory for Mental Health conducted a retrospective clinical audit in UK services for children and adolescents.

Child Neurology: Common Occurrence of Narcolepsy Type 1 and Myasthenia Gravis.

Narcolepsy with cataplexy and myasthenia gravis are both chronic neurologic conditions causing symptoms of muscle weakness, often affecting facial muscles, and have both been attributed to an immune-mediated etiology. We report an adolescent girl diagnosed with both conditions and discuss possible shared mechanisms and the diagnostic challenges presented by her case to inform and aid clinicians managing children and young people with these rare conditions.

International consensus on sleep problems in pediatric palliative care: Paving the way.

Objective: Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking. The application of general pediatric sleep recommendations appears insufficient to address the unique challenges of the PPC dimension in terms of disease variability, duration, comorbidities, complexity of needs, and particular features of sleep problems related to hospice care.

A cross-sectional survey of healthcare professionals supporting children and young people with epilepsy and their parents/carers: which topics are raised in clinical consultations and can healthcare professionals provide the support needed?

Background And Purpose: Children and young people (CYP) with epilepsy see healthcare professionals (HCPs) for management of their seizures but may require information, advice and support with a range of broader topics. The purpose of the survey was to identify from HCPs, which topics CYP with epilepsy and their parents/carers ask about other than seizure management, and how adequately HCPs feel able to support them with these topics.

Method: A cross-sectional online survey was used to collect data.

Mind and skin: Exploring the links between inflammation, sleep disturbance and neurocognitive function in patients with atopic dermatitis.

Atopic dermatitis (AD) is a chronic, pruritic and inflammatory, dry skin condition with many known comorbidities. These include airway disease, food allergies, atopic eye disease and autoimmune conditions. Furthermore, there is often significant sleep disturbance as well as increased psychological distress and mental health problems.

Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E: a protocol for a randomised controlled trial comparing an online behavioural sleep intervention with standard care in children with Rolandic epilepsy.

Introduction: Sleep and epilepsy have an established bidirectional relationship yet only one randomised controlled clinical trial has assessed the effectiveness of behavioural sleep interventions for children with epilepsy. The intervention was successful, but was delivered via face-to-face educational sessions with parents, which are costly and non-scalable to population level. The Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E trial addresses this problem by comparing clinical and cost-effectiveness in children with Rolandic epilepsy between standard care (SC) and SC augmented with a novel, tailored parent-led CASTLE Online Sleep Intervention (COSI) that incorporates evidence-based behavioural components.

The impact of parent treatment preference and other factors on recruitment: lessons learned from a paediatric epilepsy randomised controlled trial.

Background: In paediatric epilepsy, the evidence of effectiveness of antiseizure treatment is inconclusive for some types of epilepsy. As with other paediatric clinical trials, researchers undertaking paediatric epilepsy clinical trials face a range of challenges that may compromise external validity MAIN BODY: In this paper, we critically reflect upon the factors which impacted recruitment to the pilot phase of a phase IV unblinded, randomised controlled 3×2 factorial trial examining the effectiveness of two antiseizure medications (ASMs) and a sleep behaviour intervention in children with Rolandic epilepsy. We consider the processes established to support recruitment, public and patient involvement and engagement (PPIE), site induction, our oversight of recruitment targets and figures, and the actions we took to help us understand why we failed to recruit sufficient children to continue to the substantive trial phase.

'No one's ever said anything about sleep': A qualitative investigation into mothers' experiences of sleep in children with epilepsy.

Introduction: Sleep problems in children with epilepsy (CWE) are common. However, little is known about parental experiences and feelings about managing sleep in their CWE. To provide the most appropriate services' provision, it is essential that the lived experience of parents of this patient group and the issues and problems that they face in managing their child's sleep is understood.

Sleep-Related Rhythmic Movement Disorder in Young Children with Down Syndrome: Prevalence and Clinical Features.

Sleep-related Rhythmic Movement Disorder (RMD) affects around 1% of UK pre-school children. Little is known about RMD in Down syndrome (DS). We aimed to determine: (a) the prevalence of RMD in children with DS aged 1.

Feasibility and parental perception of home sleep studies during COVID-19: a tertiary sleep centre experience.

Objective: Rapid implementation of home sleep studies during the first UK COVID-19 'lockdown'-completion rates, family feedback and factors that predict success.

Design: We included all patients who had a sleep study conducted at home instead of as inpatient from 30 March 2020 to 30 June 2020. Studies with less than 4 hours of data for analysis were defined 'unsuccessful'.

A Qualitative Investigation Into What Parents Want From an Online Behavioural Sleep Intervention for Children With Epilepsy.

Many of the same sleep problems seen in typically developing (TD) children are frequently experienced by children with epilepsy (CWE). Behavioural sleep interventions (BSIs) are commonly and successfully used to treat these sleep problems in TD children and in some neurodevelopmental disorder populations. Therefore, BSIs should be effective in CWE, however, there are special seizure-related considerations for CWE and their parents which may be salient to consider in any future BSI development for this group.

Development and Evaluation of the CASTLE Trial Online Sleep Intervention for Parents of Children with Epilepsy.

Many of the sleep problems experienced by children with epilepsy (CWE) have the same behavioural basis as common sleep problems seen in typically developing (TD) children. Behavioural sleep interventions (BSIs) are widely used to treat these sleep problems in TD children and are hypothesised to be effective for CWE. However, specific considerations need to be addressed and incorporated into a BSI for CWE to ensure the intervention is tailored to this population's needs.

Reassessment of the risk of narcolepsy in children in England 8 years after receipt of the AS03-adjuvanted H1N1 pandemic vaccine: A case-coverage study.

Background: Early studies of narcolepsy after AS03-adjuvanted pandemic A/H1N12009 vaccine (Pandemrix) could not define the duration of elevated risk post-vaccination nor the risk in children aged under 5 years who may not present until much older.

Methods/findings: Clinical information and sleep test results, extracted from hospital notes at 3 large pediatric sleep centers in England between September 2017 and June 2018 for narcolepsy cases aged 4-19 years with symptom onset since January 2009, were reviewed by an expert panel to confirm the diagnosis. Vaccination histories were independently obtained from general practitioners (GPs).

Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy.

Objective: The objectives of the study were to (1) map questions in epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL) to a proposed core outcome set (COS) for childhood epilepsy research and (2) gain insight into the acceptability of two leading candidate PROMs.

Method: We identified 11 epilepsy-specific PROMs of children's HRQoL (17 questionnaire versions) in a previous systematic review. Each item from the PROMs was mapped to 38 discrete outcomes across 10 domains of the COS: seizures, sleep, social functioning, mental health, cognition, physical functioning, behavior, adverse events, family life, and global quality of life.

Achondroplasia Foramen Magnum Score: screening infants for stenosis.

Background: Achondroplasia is associated with foramen magnum stenosis (FMS) and significant risk of morbidity and sudden death in infants. A sensitive and reliable method of detecting infants who require decompressive surgery is required. This study aims to describe the incidence and severity of FMS in an unselected, sequential series of infants using a novel MRI score and retrospectively correlate severity with clinical examination and cardiorespiratory sleep (CRS) studies.

Psychometric Properties and Predictive Value of a Screening Questionnaire for Obstructive Sleep Apnea in Young Children With Down Syndrome.

Study Objectives: Obstructive sleep apnea (OSA) is common in children with Down syndrome (DS) and is associated with adverse health and cognitive outcomes. Daytime clinical assessment is poorly predictive of OSA, so regular screening with sleep studies is recommended. However, sleep studies are costly and not available to all children worldwide.

Sleep, Growth, and Puberty After 2 Years of Prolonged-Release Melatonin in Children With Autism Spectrum Disorder.

Objective: A recent 3-month double-blind, placebo-controlled study demonstrated efficacy and safety of pediatric prolonged-release melatonin (PedPRM) for insomnia in children with autism spectrum disorder. This study examined the long-term effects of PedPRM treatment on sleep, growth, body mass index, and pubertal development.

Method: Eighty children and adolescents (2-17.

Epilepsy-specific patient-reported outcome measures of children's health-related quality of life: A systematic review of measurement properties.

Objective: To identify and appraise published evidence of the measurement properties for epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL).

Methods: We searched multiple databases for studies evaluating the measurement properties of English-language epilepsy-specific PROMs of children's HRQoL. We assessed the methodological quality using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance.

Sleep difficulties in children with Tourette syndrome and chronic tic disorders: a systematic review of characteristics and associated factors.

Sleep difficulties are common in children and young people with Tourette syndrome and chronic tic disorders (TS/CTD). However, it is unclear whether sleep problems can be considered typical of the TS/CTD phenotype or whether they reflect concomitant factors such as individual patient characteristics (e.g.