182 results match your criteria: "The Sydney Children's Hospitals Network[Affiliation]"

Introduction: In 2015, Australia and New Zealand treatment guidelines recommended a 2 h paracetamol serum concentration for risk assessment of unintentional paracetamol liquid exposures. We assess our experience with this approach.

Methods: Retrospective case review of children <6 years-old with liquid paracetamol overdoses referred to a regional poisons information centre January 2017 to August 2022.

View Article and Find Full Text PDF

Objective: This study aims to explore the associated impairments of cerebral palsy (CP) and their correlates among children with CP in Vietnam.

Design: Descriptive cross-sectional study using hospital-based surveillance.

Setting: National Children's Hospital, Hanoi, Vietnam between June and November 2017.

View Article and Find Full Text PDF

Ketogenic diet therapy (KDT) is an established treatment for people with epilepsy. As increasing evidence demonstrates effectiveness and safety of KDT on seizure reduction, cognition and behaviour, it is essential to evaluate factors hindering and supporting neurologists in prescribing KDT to strengthen quality, evidence-based, appropriate and equitable care. A study of Australian and New Zealand (ANZ) neurologists was undertaken via an online survey.

View Article and Find Full Text PDF

Early diagnosis of Duchenne muscular dystrophy - A Treat-NMD international workshop.

Neuromuscul Disord

December 2024

Department of Paediatrics, MDUK Oxford Neuromuscular Centre, University of Oxford, Oxford, UK; Department of Pediatrics, Division of Child Neurology Reference Center for Neuromuscular Disease, University Hospital of Liège & University of La Citadelle, Liège, Belgium; Division of Child Neurology, Department of Pediatrics, Centre de Référence des Maladies Neuromusculaires, University Hospital Liège and University of Liège, Liège, Belgium.

The diagnosis of Duchenne muscular dystrophy (DMD) is significant at any stage, however an early diagnosis in a presymptomatic or very early phase of DMD, offers unique opportunities and challenges for families and health care providers. Currently, there is limited evidence as to the optimal models of care during this stage of the condition..

View Article and Find Full Text PDF
Article Synopsis
  • The study aimed to evaluate hearing outcomes at 24 months for infants with mild congenital cytomegalovirus (cCMV) infection, comparing those who received antiviral treatment to those who did not.
  • Utilizing data from the European Registry of Children with cCMV, researchers included infants diagnosed with cCMV early in life, who had normal physical exams and mild imaging findings.
  • Results showed that 34.7% of the 196 participants received antiviral treatment, but there was no significant difference in hearing loss prevalence between treated (4.6%) and untreated groups (6.3%) after two years.
View Article and Find Full Text PDF

Purpose: To investigate impact of International Classification of Functioning, Disability and Health (ICF) personal factors on pain, function, or quality of life following lower limb orthopaedic surgery in children with cerebral palsy (CP).

Materials And Methods: Systematic review of prospective studies of lower limb orthopaedic surgery in children with CP reporting relationships between ICF personal factors, and pain, function, or quality of life.

Results: Eight prospective studies reporting various orthopaedic procedures (median follow-up 2.

View Article and Find Full Text PDF
Article Synopsis
  • The study highlights the growing issue of poisoning in New South Wales, Australia, indicating a need for better data on its impact on health outcomes and its epidemiology.
  • It analyzed a decade's worth of health data (2011-2020) from various sources, revealing over 845,000 events related to poisoning, with the majority stemming from adverse drug reactions and intentional poisonings, particularly affecting younger individuals.
  • The findings show that demographics and reasons for poisoning vary significantly, with notable contributions from substance and mood disorders, suggesting a complex interplay between mental health and poisoning cases in the region.
View Article and Find Full Text PDF

Parent-young person lived experience of sensory dysregulation in children with tic disorders: a qualitative study.

Disabil Rehabil

September 2024

The Sydney Children's Hospitals Network, Sydney, Australia and School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.

Purpose: To understand the breadth of sensory dysregulation on participation in daily tasks for young people with tic disorders, as research identified that sensory dysregulation experiences are broader than the symptoms being assessed.

Methods: Eighteen semi-structured interviews were conducted with 16 families with children (5-16 years) with tic disorders. Interviews ranged from 45 to 120 min and were transcribed verbatim.

View Article and Find Full Text PDF

Performance of upper limb entry item to predict forced vital capacity in dysferlin-deficient limb girdle muscular dystrophy.

Neuromuscul Disord

October 2024

The John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon, Tyne, United Kingdom. Electronic address:

Dysferlin-deficient limb girdle muscular dystrophy (LGMD R2), also referred to as dysferlinopathy, can be associated with respiratory muscle weakness as the disease progresses. Clinical practice guidelines recommend biennial lung function assessments in patients with dysferlinopathy to screen for respiratory impairment. However, lack of universal access to spirometry equipment and trained specialists makes regular monitoring challenging.

View Article and Find Full Text PDF

To date, 3,900 gene therapy clinical trials have been completed, are ongoing or have been approved worldwide. Our database brings together global information on gene therapy clinical activity from trial databases, official agency sources, published literature, conference presentations and posters kindly provided to us by individual investigators or trial sponsors. This review presents our analysis of clinical trials that, to the best of our knowledge, have been or are being performed worldwide.

View Article and Find Full Text PDF

Aim: To elicit experiences of parents of children with neurodevelopmental conditions using a new perioperative pathway.

Method: Parents of children accessing an adapted perioperative clinical pathway in a tertiary children's hospital between July 2019 and December 2020 were invited to participate. A mixed method study was conducted comprising a short survey questionnaire followed by telephonic interviews.

View Article and Find Full Text PDF

Herpes simplex virus in infancy: Evaluation of national surveillance case capture.

J Paediatr Child Health

October 2024

The Australian Paediatric Surveillance Unit, Kids Research, Sydney Children'sHospitals Network (SCHN), Sydney, New South Wales, Australia.

Aim: As herpes simplex virus (HSV) in infancy is not a mandatory notifiable condition in Australia, completeness of ascertainment by the Australian Paediatric Surveillance Unit (APSU) has been difficult to evaluate to date. We evaluated case capture in Queensland (QLD) and Western Australia (WA) using statewide laboratory and clinical data and complementary surveillance data collected via the APSU.

Methods: HSV polymerase chain reaction positive results in infants (0-3 months) from 2007 to 2017 were obtained from statewide public pathology providers in QLD and WA.

View Article and Find Full Text PDF

Quality of Life and Well-Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study.

J Am Heart Assoc

August 2024

Heart and Mind Wellbeing Center Heart Institute and Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center and Department of Pediatrics, University of Cincinnati College of Medicine Cincinnati OH United States.

Article Synopsis
  • A study assessed the global and health-related quality of life (QOL) among 66 adults with Fontan physiology in Australia and New Zealand, finding lower QOL compared to community norms.
  • Health-related QOL was significantly impacted by factors such as age, sex, education, hospital stays, and various types of psychological stress.
  • The research highlights the need for tailored support and proactive care to improve QOL for Fontan patients, as psychological and relational elements were major contributors to their lower reported outcomes.*
View Article and Find Full Text PDF

Clinician Perceptions of Family-Centered Care in Pediatric and Congenital Heart Settings.

JAMA Netw Open

July 2024

Heart and Mind Wellbeing Center, Heart Institute and the Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.

Importance: Family-centered care recognizes families as central to child health and well-being and prioritizes clinician collaboration with families to ensure optimal pediatric care and outcomes. Clinician interpersonal sensitivity and communication skills are key to this approach.

Objective: To examine perceptions of and factors associated with family-centered care among clinicians working in pediatric and congenital heart care.

View Article and Find Full Text PDF

Introduction: The social determinants of health contribute to poorer health outcomes for children with cerebral palsy (CP) and are barriers to families accessing health services. At an individual level, social determinants of health are experienced as unmet social needs, for example, unsafe housing conditions. There is emerging evidence that clinical pathways for the systematic identification and referral to services for unmet social needs can support families to address these needs.

View Article and Find Full Text PDF

Wellbeing in Children and Adolescents with Fontan Physiology.

J Pediatr

October 2024

Heart and Mind Wellbeing Center, Heart Institute and Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center and Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH. Electronic address:

Objective: To assess health-related quality of life (HRQOL) and global quality of life (QOL) in children and adolescents with Fontan physiology and identify key predictors influencing these outcomes.

Study Design: Cross-sectional analysis of 73 children and adolescents enrolled in the Australia and New Zealand Fontan Registry aged 6-17 years, at least 12 months post-Fontan operation. Assessments included the Pediatric Quality of Life Inventory (PedsQL) for HRQOL and a developmentally-tailored visual analogue scale (0-10) for global QOL, along with validated sociodemographic, clinical, psychological, relational, and parental measures.

View Article and Find Full Text PDF

Objectives: To compare medication errors identified at audit and via direct observation with medication errors reported to an incident reporting system at paediatric hospitals and to investigate differences in types and severity of errors detected and reported by staff.

Methods: This is a comparison study at two tertiary referral paediatric hospitals between 2016 and 2020 in Australia. Prescribing errors were identified from a medication chart audit of 7785 patient records.

View Article and Find Full Text PDF

Due to the increasing complexity of genomic data interpretation, and need for close collaboration with clinical, laboratory, and research expertise, genomics often requires a multidisciplinary team (MDT) approach. This systematic review aims to establish the evidence for effectiveness of the genomic multidisciplinary team, and the implementation components of this model that can inform precision care. MEDLINE, Embase and PsycINFO databases were searched in 2022 and 2023.

View Article and Find Full Text PDF

Objective: To identify factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible.

Data Sources: Databases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL. Additional articles were obtained from an ancestral search and hand-searching three journals.

View Article and Find Full Text PDF

Introduction: The Kids Guided Personalised Service (KidsGPS) is an integrated model of care coordination for children and young people (CYP) living with medical complexity. After successful implementation in an urban setting, the model of care will be rolled-out at scale to four rural regions in New South Wales, Australia to establish RuralKidsGPS. This paper describes the approach and methods for the outcome and implementation evaluation of RuralKidsGPS.

View Article and Find Full Text PDF

Objective: Parents and their infants with complex congenital heart disease (CHD) face relational challenges, including marked distress, early separations, and infant hospitalizations and medical procedures, yet the prevalence of parent-infant interaction difficulties remains unclear. Using a standardized observational paradigm, this study investigated mother-infant dyadic synchrony, interactional patterns, and associated predictors in mother-infant pairs affected by CHD, compared with typically-developing pairs.

Methods: In this prospective, longitudinal cohort study, mothers and their infants requiring cardiac surgery before age 6-months (n=110 pairs) and an age- and sex-matched Australian community sample (n=85 pairs) participated in a filmed, free-play interaction at 6.

View Article and Find Full Text PDF

Erratum to Commun Dis Intell (2018) 2023;47. (https://doi.org/10.33321/cdi.2023.47.46).

Commun Dis Intell (2018)

October 2023

The Australian Paediatric Surveillance Unit; The University of Sydney, Faculty of Medicine and Health, Discipline of Child and Adolescent Health, Sydney, New South Wales, Australia; The Sydney Children's Hospitals Network, Westmead, Sydney, New South Wales, Australia.

The text within this report, as originally published, incorrectly stated that the two included cases of dengue had not recently travelled to a dengue-endemic country. A reexamination of the case data has shown that both cases had recently travelled to a country where dengue is endemic. The paragraph below provides the corrected text for the dengue case descriptions, and replaces the paragraph at the foot of the right-hand column of text on page 10 of the published report.

View Article and Find Full Text PDF

Australian Paediatric Surveillance Unit (APSU) Annual Surveillance Report 2022.

Commun Dis Intell (2018)

August 2023

The University of Sydney, Faculty of Medicine and Health, Discipline of Child and Adolescent Health, Sydney, New South Wales, Australia; The Sydney Children's Hospitals Network, Westmead, Sydney, New South Wales, Australia; Director of the Australian Paediatric Surveillance Unit.

For 30 years the Australian Paediatric Surveillance Unit (APSU) has conducted national surveillance of rare communicable diseases and rare complications of communicable diseases. In this report, we describe the results of thirteen such studies surveyed by the APSU in 2022, including reported case numbers and incidence estimates, demographics, clinical features, management and short-term outcomes. Conditions described are: acute flaccid paralysis (AFP); congenital cytomegalovirus (cCMV); neonatal and infant herpes simplex virus (HSV) infection; perinatal exposure to human immunodeficiency virus (HIV) and paediatric HIV infection; severe complications of influenza; juvenile-onset recurrent respiratory papillomatosis (JoRRP); congenital rubella infection/syndrome; congenital varicella syndrome (CVS) and neonatal varicella infection (NVI); and the new conditions dengue; Q fever; and severe acute hepatitis.

View Article and Find Full Text PDF