Responding to the 'crowd' of voices and opinions in the paediatric clinical space: an ethics perspective.

Ready access to the internet and online sources of information about child health and disease has allowed people more 'distant' from a child, family and paediatric clinician to inform and influence clinical decisions. It has also allowed parents to share aspects of their child's health and illness to garner support or funding for treatment. As a consequence, paediatric clinicians must consider and incorporate the crowd of opinions and voices into their clinical and ethical reasoning.

Evaluation of RuralkidsGPS; A Novel Integrated Paediatric Care Coordination Model of Care in Rural Australia - a Mixed-Methods Study Protocol.

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.

What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis.

Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability.

Design, Setting And Participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety.

Feasibility of linking universal child and family healthcare and financial counselling: findings from the Australian Healthier Wealthier Families (HWF) mixed-methods study.

Objectives: 'Healthier Wealthier Families' (HWF) seeks to reduce financial hardship in the early years by embedding a referral pathway between Australia's universal child and family health (CFH) services and financial counselling. This pilot study investigated the feasibility and short-term impacts of HWF, adapted from a successful Scottish initiative.

Methods: Setting: CFH services in five sites across two states, coinciding with the COVID-19 pandemic.

Using a theory informed approach to design, execute, and evaluate implementation strategies to support offering reproductive genetic carrier screening in Australia.

Background: Health care professionals play a central role in offering reproductive genetic carrier screening but face challenges when integrating the offer into practice. The aim of this study was to design, execute, and evaluate theory-informed implementation strategies to support health care professionals in offering carrier screening.

Methods: An exploratory multi-method approach was systematically employed based on the Theoretical Domain Framework (TDF).

"We are not a typical family anymore": Exploring the experiences and support needs of fathers of children with Fragile X syndrome in Australia.

A diagnosis of the X-linked condition Fragile X syndrome (FXS) in a child commonly reveals the mother's carrier status. Previous research focused on the genetic counseling process for the child and maternal family, despite calls for more research on the support needs of fathers. This study explored experiences and support needs of fathers at least 1 year after their child's FXS diagnosis to understand barriers and enablers and optimize health outcomes for the family.

Gene therapy-based strategies for spinal muscular atrophy-an Asia-Pacific perspective.

Onasemnogene abeparvovec has been life-changing for children with spinal muscular atrophy (SMA), signifying the potential and progress occurring in gene- and cell-based therapies for rare genetic diseases. Hence, it is important that clinicians gain knowledge and understanding in gene therapy-based treatment strategies for SMA. In this review, we describe the development and translation of onasemnogene abeparvovec from clinical trials to healthcare practice and share knowledge on the facilitators and barriers to implementation.

Models of care and the advanced practice nurse role in caring for children and adolescents with a cancer predisposition syndrome: a scoping review protocol.

Objective: This scoping review will examine the literature describing models of care, barriers and facilitators of care, and gaps in care delivery for children and adolescents with a cancer predisposition syndrome (CPS). It will also explore how advanced practice nurses contribute to the delivery of care for children and adolescents with a CPS.

Introduction: Cancer remains a leading cause of death in children and adolescents.

Toxicokinetics of thebaine in those consuming non-food grade poppy seeds as a tea.

Introduction: Thebaine is an alkaloid in poppy seeds that is neurotoxic to animals. Data on its clinical effects and toxicokinetics in people are minimal. In 2022, poppy seeds high in thebaine entered the Australian food market, and people consuming tea made from these poppy seeds developed poisoning.

Co-design and Consultation Ensure Consumer Needs Are Met: Building an eHealth Platform for Children with Inflammatory Bowel Disease.

Background: Crohn's Colitis Care is an adult inflammatory bowel disease eHealth system. Crohn's Colitis Care required additional pediatric functionality to enable life-long records and mitigate transition inadequacies.

Aim: This study describes and evaluates a consensus method developed to ensure consumer needs were met.

Mother-Infant Dyadic Synchrony and Interaction Patterns After Infant Cardiac Surgery.

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.

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

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.

A cluster of acute thebaine poisonings from non-food grade poppy seeds in the Australian food supply.

Introduction: Poppy seed tea is used for its opioid effects and contains multiple opium alkaloids, including morphine, codeine, papaverine, and thebaine. Animal studies indicate thebaine has strychnine-like properties, but there is limited literature describing human thebaine poisoning. We describe a cluster of acute thebaine poisoning in people ingesting tea made using poppy seeds with high thebaine content that entered the Australian food supply chain.

Changing landscape of paediatric refugee health in South Western Sydney, Australia: a retrospective observational study.

Objectives: To examine the changing health needs of refugee children and young people (CYP) entering Australia, in relation to key government policy changes.

Study Design: Retrospective analysis of health service use data over 11 years.

Setting: Paediatric refugee clinics in South Western Sydney (SWS), the Australian region with the largest annual resettlement of refugees.

Blood-Based Transcriptomic Biomarkers Are Predictive of Neurodegeneration Rather Than Alzheimer's Disease.

Alzheimer's disease (AD) is a growing global health crisis affecting millions and incurring substantial economic costs. However, clinical diagnosis remains challenging, with misdiagnoses and underdiagnoses being prevalent. There is an increased focus on putative, blood-based biomarkers that may be useful for the diagnosis as well as early detection of AD.

"Somewhere to turn to with my questions": A pre-post pilot of an information linker service for caregivers who have a child with a Developmental and Epileptic Encephalopathy.

Background: Caregivers of a child with a Developmental and Epileptic Encephalopathy (DEE) often report challenges accessing relevant and understandable information regarding their child's condition. We developed GenE Compass, an information linker service where caregivers are invited to submit questions and receive high-quality, personalised reports. We conducted a pilot evaluation to determine the feasibility and acceptability of GenE Compass.

Immunogenicity, safety, usability and acceptability of microarray patches for vaccination: a systematic review and meta-analysis.

Background: Microarray patches (MAPs) deliver vaccines to the epidermis and the upper dermis, where abundant immune cells reside. There are several potential benefits to using MAPs, including reduced sharps risk, thermostability, no need for reconstitution, tolerability and self-administration. We aimed to explore and evaluate the immunogenicity, safety, usability and acceptability of MAPs for vaccination.

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

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.

A mixed-methods review and meta-synthesis of fears of recurrence and progression in people with mental health conditions.

A fear that one's physical illness will recur or worsen has received substantial research attention over the past decade, most notably as fear of cancer recurrence. Indeed, such fear is known to be associated with poorer quality of life, adjustment, and psychopathology. However, fear of a recurrence or progression (FORP) of mental health conditions has received comparatively little study.

Social media use and paediatric practice: Hippocratic help, hype or harm?

Social media is increasingly a part of our personal and professional life and is here to stay. Here, I reflect on issues surrounding the use of social media (SMU) in the digital health context by clinicians in Australian paediatric health care. I aim to briefly highlight some inherent multifactorial and contextual ethical considerations which mainly relate to professionalism; including boundaries, obligations to patients and families within the therapeutic alliance, and balancing the help, hype and harm of SMU in clinical practice.