The characteristics of users of an online screening tool for children and adolescents with intellectual disability and of those being screened.

Screening tools can help with the identification of intellectual disability, but little is known about who uses them. This study analysed anonymous information from 2691 users of an evidence-based, online, intellectual disability screening questionnaire for children and adolescents (CAIDS-Q) to explore the characteristics of the users and of those being screened. The users were split almost equally between parents/family members (48.

Prevalence, Clinical Features, Neuroimaging, and Genetic Findings in Children With Ataxic Cerebral Palsy in Europe.

Background And Objectives: To report on prevalence, associated impairments, severity, and neuroimaging findings in children with ataxic cerebral palsy (CP).

Methods: In children coded as having ataxic CP in the Central database of Joint Research Center-Surveillance of Cerebral Palsy in Europe (JRC-SCPE) and born during 1980-2010, birth characteristics, severity profiles including associated impairments, neuroimaging patterns, and the presence of syndromes were analyzed. Definitions were according to validated SCPE guidelines.

Classification of events contributing to postneonatal cerebral palsy: Development, reliability, and recommendations for use.

Aim: This paper introduces the Surveillance of Cerebral Palsy in Europe (SCPE) classification of events contributing to postneonatally acquired cerebral palsy, presents its interrater reliability, and describes the cases identified in the SCPE database.

Method: The development of the classification, based on literature review and expert discussions, resulted in six main categories and 19 subcategories. The first chronological event designated as the primary event was mainly reported.

Hospital admissions of school-age children with an intellectual disability: A population-based survey.

Aim: To describe the profiles of hospital admissions of school-age children identified with a learning disability (ICD-11 intellectual developmental disorder) and/or safeguarding needs compared to children without learning disability, in a population where proactive identification of learning disabilities in children is embedded in practice.

Method: Data were collected about the reasons for and duration of hospital admissions of school-age children living in the study catchment area between April 2017 and March 2019; the presence (or absence) of learning disability and/or safeguarding flags in the medical record was also noted. The impact of the presence of flags on the outcomes was explored using negative binomial regression modelling.

Trends in hospital admissions during transition from paediatric to adult services for young people with learning disabilities or autism: Population-based cohort study.

Background: Transition from paediatric to adult health care may disrupt continuity of care, and result in unmet health needs. We describe changes in planned and unplanned hospital admission rates before, during and after transition for young people with learning disability (LD), or autism spectrum disorders (ASD) indicated in hospital records, who are likely to have more complex health needs.

Methods: We developed two mutually exclusive cohorts of young people with LD, and with ASD without LD, born between 1990 and 2001 in England using national hospital admission data.

Outcomes for gastrostomy-fed children and their parents: qualitative findings from the 'Your Tube' study.

Aim: To identify child and parent outcomes relevant to having a gastrostomy, and to specify outcomes believed to be particularly salient to type of diet (formula vs blended food).

Method: Twenty parents, two children (both 12y), and 41 professionals (dietitians [n=10]; nurses [n=12]; paediatricians [n=12]; speech and language therapists [n=7)]) were recruited. Parents and children were interviewed; professionals participated in focus groups.

The Origin of the Cerebral Palsies: Contribution of Population-Based Neuroimaging Data.

Background: Surveillance of cerebral palsy in Europe (SCPE) presents the first population-based results on neuroimaging findings in children with cerebral palsy (CP) using a magnetic resonance imaging classification system (MRICS).

Method: MRIs of children with CP born between 1999 and 2009 from 18 European countries were analyzed. MRICS identifies patterns of brain pathology according to timing during brain development which was analyzed with respect to CP subtypes and gestational age.

Access to Intrathecal Baclofen Treatment for Children with Cerebral Palsy in European Countries: An SCPE Survey Reveals Important Differences.

Aim: The aim is to study access to intrathecal baclofen (ITB) for children with cerebral palsy (CP) in Europe, as an indicator of access to advanced care.

Methods: Surveys were sent to CP registers, clinical networks, and pump manufacturers. Enquiries were made about ITB treatment in children born in 1990 to 2005 by sex, CP type, level of gross motor function classification system (GMFCS) and age at the start of treatment.

Something hazy drifting in the air….

-A 7-year-old boy with a background of autism presented to the paediatric emergency department with his left arm 'feeling strange' then became difficult to rouse. On examination, he was found to have left arm weakness and a left-sided facial droop without forehead muscle involvement. Three hours later, his symptoms had completely resolved and he was suspected to have had a first seizure.

'Your Tube': the role of different diets in children who are gastrostomy fed: protocol for a mixed methods exploratory sequential study.

Introduction: Increasing numbers of children require having all, or part, of their nutritional intake via gastrostomy. More parents are using home-blended meals to feed their children, with many reporting beneficial effects such as improved gastro-oesophageal reflux, less constipation and less distress in their child.This study aims to identify the important outcomes of tube feeding in this population, compare the safety, outcomes and resource use of those on a home-blended diet compared with a formula diet and assess feasibility of long-term follow-up of children recruited to this study.

[Improving Communication Quality Caring for Children with Chronic Conditions: Health, Functioning and Wellbeing Traffic-Light Tool].

Improving Communication Quality Caring for Children with Chronic Conditions: Health, Functioning and Wellbeing Traffic-Light Tool Abstract. Effective patient-doctor communication is a crucial aspect while caring for children with chronic conditions or disabilities. The Health, Functioning and Wellbeing Summary Traffic Light has been developed as a communication tool especially for these patients.

Austerity and families with disabled children: a European survey.

Aim: To describe the impact austerity measures have had on families with disabled children across Europe and on professionals providing services for them.

Method: Cross-sectional surveys were disseminated via professional and family networks in 32 European countries for 3 months from December 2016.

Results: Families (n=731), of whom 45% met UNICEF criteria for severe poverty, and professionals (n=959) responded from 23 and 32 countries respectively.

The adjunctive application of transcranial direct current stimulation in the management of de novo refractory epilepsia partialis continua in adolescent-onset -related mitochondrial disease.

Focal status epilepticus in -related mitochondrial disease is highly refractory to pharmacological agents, including general anesthesia. We report the challenges in managing a previously healthy teenager who presented with de novo epilepsia partialis continua and metabolic stroke resulting from the homozygous p.Ala467Thr mutation, the most common pathogenic variant identified in the Caucasian population.

Prevalence and characteristics of autism spectrum disorders in children with cerebral palsy.

Aim: To evaluate the prevalence of co-occurring autism spectrum disorders (ASDs) among children with cerebral palsy (CP), and to describe their characteristics.

Method: The data of 1225 CP cases from four population-based registers (Iceland, Sweden, and two in France) and one population-based surveillance programme (North East England, UK) participating in the Surveillance of Cerebral Palsy in Europe Network (SCPE) were analysed. The ASD diagnoses were systematically recorded using category F84 of the International Classification of Diseases, 10th Revision.

The Health, Functioning and Wellbeing Summary Traffic Light Communication Tool: a survey of families' views.

Aim: To ascertain families' views about the utility of the Health, Functioning and Wellbeing Summary (HFWS) in positively supporting communication in clinics.

Method: The HFWS was co-developed with families and members of the multidisciplinary team. A sequential convenience sample of 60 families who attended clinics in Sunderland, UK in 2015 agreed to participate and answered eight questions about their views on the tool's usefulness.

MRI classification system (MRICS) for children with cerebral palsy: development, reliability, and recommendations.

Aim: To develop and evaluate a classification system for magnetic resonance imaging (MRI) findings of children with cerebral palsy (CP) that can be used in CP registers.

Method: The classification system was based on pathogenic patterns occurring in different periods of brain development. The MRI classification system (MRICS) consists of five main groups: maldevelopments, predominant white matter injury, predominant grey matter injury, miscellaneous, and normal findings.

Prospective pilots of routine data capture by paediatricians in clinics and validation of the Disabilities Complexity Scale.

Aims: To pilot prospective data collection by paediatricians at the point of care across England using a defined terminology set; demonstrate feasibility of data collection and utility of data outputs; and confirm that counting the number of needs per child is valid for quantifying complexity.

Method: Paediatricians in 16 hospital and community settings collected and anonymized data. Participants completed a survey regarding the process.