Efficacy of Health Literacy Interventions for Caregivers of Individuals with Neurodevelopmental and Chronic Conditions: A Rapid Review.

Background/objectives: Caregivers of individuals with neurodevelopmental and chronic health conditions require health literacy (HL) skills for the long-term management of these conditions. The aim of this rapid review was to investigate the efficacy of HL interventions for these caregivers.

Methods: Five databases (Cochrane Central, PubMed, Embase, CINAHL, and PsycINFO) were searched.

Psychometric Properties of the EQ-5D-Y-5L for Children With Intellectual Disability.

Objectives: The EQ-5D-Y-5L is a generic preference-based measure of health-related quality of life for children. This study aimed to describe the distributional properties, test-retest reliability, and convergent validity of the EQ-5D-Y-5L in children with intellectual disability (ID).

Methods: Caregivers of children with ID (aged 4 to 18 years) completed an online survey, including a proxy-report EQ-5D-Y-5L, the Quality-of-life Inventory-Disability, and disability-appropriate measures corresponding to the EQ-5D dimensions: mobility, self-care (SC), usual activities (UA), pain/discomfort (PD), and worry/sadness/unhappiness.

Can RESPiratory hospital Admissions in children with cerebral palsy be reduced? A feasibility randomised Controlled Trial pilot study protocol (RESP-ACT).

Introduction: The most common cause of morbidity and mortality in children with severe cerebral palsy (CP) is respiratory disease. BREATHE-CP (Better REspiratory and Airway Treatment and HEalth in Cerebral Palsy) is a multidisciplinary research team who have conducted research on the risk factors associated with CP respiratory disease, a systematic review on management and a Delphi study on the development of a consensus for the prevention and management of respiratory disease in CP. These strategies have not been investigated; therefore, it is not known if implementation is feasible, if they improve patient outcomes or if they are acceptable for families.

How Well Does the EQ-5D-Y-5L Describe Children With Intellectual Disability?: "There's a Lot More to My Child Than That She Can't Wash or Dress Herself.".

Objectives: The EQ-5D-5L is a generic health utility instrument for measuring health-related quality of life (HRQoL), with self-report and proxy report versions for children (EQ-5D-Y-5L). Children with intellectual disability (ID) are a heterogeneous population whose impairments and comorbidities place them at risk of poor HRQoL. This study aimed to describe the content validity and suitability for children with ID of a proxy report version of the EQ-5D-Y-5L as seen by their caregivers.

Empowering future surgeons: a workshop bridging the gap between graduation and the operating room.

Aims/background: Feedback from foundation trainees in Blackpool highlighted low levels of confidence with the prospect of surgical on-call shifts. Key areas of concern were assessing and managing the acute surgical patient, identifying which patients need an operation and having the technical skills to proficiently assist in theatre. This lack of confidence prevents trainees engaging in what should be an educational and rewarding rotation.

IPEM topical report: guidance for the clinical implementation of online treatment monitoring solutions for IMRT/VMAT.

This report provides guidance for the implementation of online treatment monitoring (OTM) solutions in radiotherapy (RT), with a focus on modulated treatments. Support is provided covering the implementation process, from identification of an OTM solution to local implementation strategy. Guidance has been developed by a RT special interest group (RTSIG) working party (WP) on behalf of the Institute of Physics and Engineering in Medicine (IPEM).

The cost of respiratory hospitalizations in children with cerebral palsy.

Aim: To establish the burden of respiratory illness in cerebral palsy (CP) on the Western Australian health care system by quantifying the costs of respiratory hospitalizations in children with CP, compared with non-respiratory hospitalizations.

Method: A 2-year (2014-2015) retrospective study using linked hospital data (excluding emergency department visits), in a population of children with CP in Western Australia aged 18 years and under (median age at hospitalization 7 years; interquartile range 5-12 years).

Results: In 671 individuals (57% male) there were 726 emergency hospitalizations, and 1631 elective hospitalizations.

Respiratory Health Inequities among Children and Young Adults with Cerebral Palsy in Aotearoa New Zealand: A Data Linkage Study.

(1) Background: Respiratory disease is a leading cause of morbidity, mortality, and poor quality of life in children with cerebral palsy (CP). This study describes the prevalence of CP-related respiratory disease and the non-modifiable risk factors for respiratory-related hospital admissions in the Aotearoa New Zealand population. (2) Methods: New Zealand Cerebral Palsy Register (NZCPR) participant data and de-identified data from the National Minimum Dataset and Pharmaceutical Dispensing Collections were linked to identify all respiratory-related hospital admissions and respiratory illness-related antibiotic exposure over 5 years in individuals with CP (0−26 years).

The Use of Patient Engagement to Gather Perceptions on the Cost of Infant Feeding.

Purpose: Patient-oriented research (POR) and patient engagement (PE) has highlighted the value of incorporating patients' ideas and priorities in health research. Using the guiding principles of POR and PE, the current study conducted PE sessions to gain insight on the perceptions of mothers regarding the costs of infant feeding.

Methods: Four patient engagement sessions were held with mothers residing in Newfoundland and Labrador between November 2019 and January 2020.

Barriers to medication adherence in children, adolescents, and young adults prescribed anticoagulation.

Pediatric and adolescent and young adult (AYA) thromboembolism is treated with anticoagulation, but little is known about adherence. The aims of this study were to describe barriers to adherence among children and AYAs (ages 0-25 years) prescribed anticoagulants and to explore the relationship between barriers and self-reported adherence. Nearly 75% of patients and caregivers reported barriers, and a larger number of barriers was associated with missing at least one dose in the past month per both patient (r  = 0.

Can telehealth increase physical activity in individuals with Rett syndrome? A multicentre randomized controlled trial.

Aim: To evaluate the effects of a physical activity programme on sedentary behaviour and physical activity in ambulant individuals with Rett syndrome (RTT).

Method: In this multicentre randomized waitlist-controlled trial, we recruited 43 ambulatory individuals with RTT in Australia and Denmark. Adequate baseline data were obtained from 38 participants (mean age 20 years, range 6-41, SD 10 years 6 months, one male).

Chronic Pain in Young People With Cerebral Palsy: Activity Limitations and Coping Strategies.

Purpose: To describe the effect of chronic pain on the activities of children and adolescents with cerebral palsy, to describe coping strategies, and to examine associations between effect of pain on activities, coping strategies, and level of pain.

Methods: Using an online survey, 27, 8- to 18-year-olds with cerebral palsy and chronic pain or their parents reported pain intensity, distribution, activity limitations (using the Child Activity Limitations Interview-21), and coping strategies (using the Pediatric Pain Coping Inventory).

Results: Pain intensity ranged from 3 to 10, and 89% reported pain in multiple areas, principally the lower limbs.

The Effectiveness of Virtual Lactation Support: A Systematic Review and Meta-Analysis.

Background: The World Health Organization recommends lactation support to enhance the rates of exclusive breastfeeding. Access to in person lactation support may be limited due to scarcity of resources (e.g.

Daytime sleepiness and emotional and behavioral disturbances in Prader-Willi syndrome.

Individuals with Prader-Willi syndrome (PWS) often have excessive daytime sleepiness and emotional/behavioral disturbances. The objective of this study was to examine whether daytime sleepiness was associated with these emotional/behavioral problems, independent of nighttime sleep-disordered breathing, or the duration of sleep. Caregivers of individuals with PWS (aged 3 to 25 years) completed the Pediatric Sleep Questionnaire (PSQ), Epworth Sleepiness Scale for Children and Adolescents (ESS-CHAD), and the parent version of the Developmental Behavior Checklist (DBC-P).

Strengths and challenging behaviors in children and adolescents with Prader-Willi syndrome: Two sides to the coin.

Prader-Willi Syndrome (PWS) is a rare genetic disorder associated with emotional/behavioral disturbances. These difficulties are well documented in the literature, but the positive attributes of these individuals are not described. Taking a strengths-based approach, the aim of this study was to describe the emotional/behavioral strengths and difficulties in children and young people with PWS from their parent caregivers' perspectives.

An Update on Perinatal Cannabis Use.

Since the legalization of non-medical cannabis, many questions have arisen regarding cannabis use during pregnancy. Obstetrical care providers can minimize the harms of prenatal cannabis use using evidence-based information. This commentary describes populations at highest risk for use, the predictors of use, the reasons birthing people continue or stop using cannabis during pregnancy, and short- and long-term outcomes for infants and children exposed to cannabis prenatally.

IPEM topical report: results of a 2020 UK survey on the use of online treatment monitoring solutions for IMRT/VMAT.

Numerous commercial technologies for online treatment monitoring (OTM) in radiotherapy (RT) are currently available including electronic portal imaging device (EPID)dosimetry (IVD), transmission detectors and log files analysis. Despite this, in the UK there exists limited guidance on how to implement and commission a system for clinical use or information about the resources required to set up and maintain a service. A Radiotherapy Special Interest Group working party, established by Institute of Physics and Engineering in Medicine was formed with a view to reassess the current practice for OTM in the UK and an aim to develop consensus guidelines for the implementation of a system.

Isoginkgetin leads to decreased protein synthesis and activates an ATF4-dependent transcriptional response.

Isoginkgetin (IGG) is a small molecule inhibitor of pre-mRNA splicing. Failure to accurately remove introns could lead to the production of aberrant mRNAs and proteins. The cellular responses to splicing stress are not well defined.

Nonsurgical weight loss interventions: A systematic review of systematic reviews and meta-analyses.

Access to bariatric surgery to treat obesity is limited and has long wait times. Many adults are seeking nonsurgical weight loss support. Our study objective was to conduct a systematic review of nonsurgical weight loss interventions.

The spliceosome inhibitors isoginkgetin and pladienolide B induce ATF3-dependent cell death.

The spliceosome assembles on pre-mRNA in a stepwise manner through five successive pre-spliceosome complexes. The spliceosome functions to remove introns from pre-mRNAs to generate mature mRNAs that encode functional proteins. Many small molecule inhibitors of the spliceosome have been identified and they are cytotoxic.

Avoiding Cribari gridlock 2: The standardized triage assessment tool outperforms the Cribari matrix method in 38 adult and pediatric trauma centers.

Objectives: The Cribari Matrix Method (CMM) is the current standard to identify over/undertriage but requires manual trauma triage reviews to address its inadequacies. The Standardized Triage Assessment Tool (STAT) partially emulates triage review by combining CMM with the Need For Trauma Intervention, an indicator of major trauma. This study aimed to validate STAT in a multicenter sample.

Prevention and management of respiratory disease in young people with cerebral palsy: consensus statement.

Respiratory illness is the leading cause of mortality in children with cerebral palsy (CP). Although risk factors for developing chronic respiratory illness have been identified, comprehensive clinical care recommendations for the prevention and management of respiratory illness do not currently exist. We invited over 200 clinicians and researchers from multiple disciplines with expertise in the management of respiratory illness in children with CP to develop care recommendations using a modified Delphi method on the basis of the RAND Corporation-University of California Los Angeles Appropriateness Method.