A5056012866- Cerebral Palsy and Movement Disorders
- Family and Disability Support Research
- Child and Adolescent Health
- Infant Development and Preterm Care
- Adolescent and Pediatric Healthcare
- Childhood Cancer Survivors' Quality of Life
- Neonatal and fetal brain pathology
- Ethics and Legal Issues in Pediatric Healthcare
- Child Nutrition and Feeding Issues
- Autism Spectrum Disorder Research
- Down syndrome and intellectual disability research
- Neonatal Respiratory Health Research
- Clinical Nutrition and Gastroenterology
- Disability Rights and Representation
- Botulinum Toxin and Related Neurological Disorders
- Palliative Care and End-of-Life Issues
- Healthcare Systems and Technology
- Healthcare Policy and Management
- Congenital heart defects research
- Genomics and Rare Diseases
- Family Support in Illness
- Family and Patient Care in Intensive Care Units
- Genetics and Neurodevelopmental Disorders
- Emergency and Acute Care Studies
- Chronic Disease Management Strategies
University of Sunderland
2023-2025
South Tyneside and Sunderland NHS Foundation Trust
2012-2023
Université Toulouse III - Paul Sabatier
2023
Inserm
2023
Sykehuset i Vestfold
2023
Sunderland Royal Hospital
2009-2020
Public Health England
2020
British Academy
2016-2017
City Hospital
2015-2016
Nottingham University Hospitals NHS Trust
2014
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.The was based on pathogenic patterns occurring different periods brain development. The MRI (MRICS) consists five main groups: maldevelopments, predominant white matter injury, grey miscellaneous, normal findings. A detailed manual the descriptions these developed, including test cases...
ABSTRACT Background Postneonatal cerebral palsy (PNCP) is rare and requires large databases to be studied over time. Objectives To study the time trend of prevalence PNCP overall by cause, describe clinical characteristics children with according cause compared pre/peri/neonatal CP (PPNCP). Methods The Surveillance Cerebral Palsy in Europe (SCPE) database was used. Primary events (the first known chronological event causal chain) were classified SCPE classification (six main 19...
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 1225 CP cases from four population‐based registers (Iceland, Sweden, two in France) one surveillance programme (North East England, UK) participating Surveillance Cerebral Palsy Europe Network (SCPE) were analysed. ASD diagnoses systematically recorded using category F84 International Classification Diseases, 10th...
Abstract Background Surveillance of cerebral palsy in Europe (SCPE) presents the first population-based results on neuroimaging findings children with (CP) using a magnetic resonance imaging classification system (MRICS). Method MRIs CP born between 1999 and 2009 from 18 European countries were analyzed. MRICS identifies patterns brain pathology according to timing during development which was analyzed respect subtypes gestational age. Results or written reports 3,818 available. The main...
Abstract Background Autism is proposed to be characterised by an atypical balance of cortical excitation and inhibition (E/I). However, most studies have examined E/I alterations in older autistic individuals, meaning that findings could part reflect homeostatic compensation. To assess the directionality effects, it necessary examine early lifespan before symptom emergence. Recent explanatory frameworks argued also consider how risk features interact with later developing modifier factors...
Aim To compare the prevalence of gastrostomy tube feeding (GTF) children with cerebral palsy (CP) in six European countries. Method Data on 1295 (754 males, 541 females; mean age 5y 11mo, range 11y 2mo, min 6mo, max 8mo) CP born from 1999 to 2001 were collected geographically defined areas countries; four covered whole country. Distribution was unilateral 37%, bilateral 51%, dyskinetic 8%, and ataxic 4%. Sixty classified Gross Motor Function Classification System (GMFCS) levels I II, 6 level...
To develop a Disabilities Terminology Set and quantify the multifaceted needs of disabled children their families in district disability clinic population.Data from structured electronic letters attending paediatric clinics June 2007 to May 2012 Sunderland, north-east England collected at point clinical care were analysed determine appropriate terms for consistent recording each need issue. Terms collated count number per child.A Systemized Nomenclature Medicine - Clinical subset 296 was...
Aim To describe the impact austerity measures have had on families with disabled children across Europe and professionals providing services for them. Method Cross‐sectional surveys were disseminated via professional family networks in 32 European countries 3 months from December 2016. Results Families ( n =731), of whom 45% met UNICEF criteria severe poverty, =959) responded 23 respectively. Respondents grouped into those without austerity. The direct indirect cuts worse working conditions...
Aim To identify child and parent outcomes relevant to having a gastrostomy, specify believed be particularly salient type of diet (formula vs blended food). Method Twenty parents, two children (both 12y), 41 professionals (dietitians [ n =10]; nurses =12]; paediatricians speech language therapists =7)]) were recruited. Parents interviewed; participated in focus groups. Children (2–18y) represented included those on formula ( =11), blended‐food =7), mixed =2) diets. All had been tube‐fed for...
This paper introduces the Surveillance of Cerebral Palsy in Europe (SCPE) classification events contributing to postneonatally acquired cerebral palsy, presents its interrater reliability, and describes cases identified SCPE database.
To report on prevalence, associated impairments, severity, and neuroimaging findings in children with ataxic cerebral palsy (CP).
Focal status epilepticus in
To pilot prospective data collection by paediatricians at the point of care across England using a defined terminology set; demonstrate feasibility and utility outputs; confirm that counting number needs per child is valid for quantifying complexity.Paediatricians in 16 hospital community settings collected anonymized data. Participants completed survey regarding process. Data were analysed R version 3.1.2.Overall, 8117 captured from 1224 consultations recorded. Sixteen clinicians responded...
Collecting clinical data has huge benefits, and many bespoke systems have been well supported by clinicians with outputs leading to improved care.1 The National Health Service (NHS) one of the most comprehensive collection for inpatients in world (Hospital Episode Statistics). Although are used extensively commissioning NHS management, few find either accessible or useful.2 This is unfortunate because potentially quality indicators3 could be developed that would significantly enhance care...
Introduction Increasing numbers of children require having all, or part, their nutritional intake via gastrostomy. More parents are using home-blended meals to feed children, with many reporting beneficial effects such as improved gastro-oesophageal reflux, less constipation and distress in child. This study aims identify the important outcomes tube feeding this population, compare safety, resource use those on a diet compared formula assess feasibility long-term follow-up recruited study....
Aim To explore the provision and variations in care for children young people with cerebral palsies ( CP ) registered population‐based North of England Collaborative Cerebral Palsy Survey NECCPS ). Method This is a retrospective multicentre record audit 389 (220 males, 148 females, 21 no data; median age at time 12y 3mo), born between 1995 2002. Data were collected on cranial magnetic resonance imaging MRI ), hip spine surveillance management, pain presence management. Variations over...
Congenital diaphragmatic hernia (CDH) can occur in isolation or conjunction with other birth defects (CDH+). A molecular etiology only be identified a subset of CDH cases. This is due, part, to an incomplete understanding the genes that contribute diaphragm development. Here, we used clinical and data from 36 individuals CDH+ who are cataloged DECIPHER database identify may play role development discover new phenotypic expansions. Among this group, carried putatively deleterious sequence...
Abstract Aim To assess the risks, benefits, and resource implications of home‐blended food for children with gastrostomy tubes compared a formula diet. Method This prospective cohort study (aged 0–18 years) collected baseline data on gastrointestinal symptoms, nutritional intake, anthropometric outcomes, parent child quality life, use. A propensity score‐weighted generalized linear mixed model was used to compare receiving versus Results Baseline were obtained 180 (2019–2021; 107 males, 73...
Objective To assess the risks, benefits and resource implications of using home-blended food in children with gastrostomy tubes compared currently recommended formula feeds. Design This is a cohort study. Data were collected at months 0, 12 18 from parents clinicians standardised measures. Setting 32 sites across England: 28 National Health Service trusts 4 children’s hospices. Patients Children aged 6 months–18 years who fed. Main outcome measure The main was PedsQL Gastrointestinal...
To ascertain families' views about the utility of Health, Functioning and Wellbeing Summary (HFWS) in positively supporting communication clinics.The HFWS was co-developed with families members multidisciplinary team. A sequential convenience sample 60 who attended clinics Sunderland, UK 2015 agreed to participate answered eight questions their on tool's usefulness. Data were recorded analysed Microsoft Excel.All that they had been able discuss everything wanted doctor. All serious concerns...
Transition from paediatric to adult health care may disrupt continuity of care, and result in unmet needs. We describe changes planned unplanned hospital admission rates before, during after transition for young people with learning disability (LD), or autism spectrum disorders (ASD) indicated records, who are likely have more complex needs.We developed two mutually exclusive cohorts LD, ASD without born between 1990 2001 England using national data. determined the annual rate change before...