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Pulmonary exacerbations pose a significant clinical burden on people with cystic fibrosis (pwCF). Whether management of exacerbations should change in the context of modulator therapy is unclear. We describe the characteristics, treatment and lung function outcomes of pulmonary exacerbations requiring intravenous antibiotic therapy (PERITs) in a contemporary Australian cohort of pwCF, in an era of rapidly broadening access to modulator therapy.
In children with Rett syndrome, this study aimed to (1) describe gross motor skill trajectories; and (2) analyse the influences of genetic variant and comorbidities. This was a prospective longitudinal study conducted at the Danish National Center for Rett Syndrome 2008 to 2022. The Rett Syndrome Gross Motor Scale (RSGMS) was administered, and clinical data collected at each visit.
Low vitamin D status and intake are prevalent among the Australian population, including Aboriginal and Torres Strait Islander peoples. We hypothesised that some traditional foods could contain vitamin D, and measured vitamin D in foods from Nyoongar Country, Western Australia. Samples of kangaroo, emu, squid/calamari and lobster/crayfish were collected and prepared by Aboriginal people using traditional and contemporary methods.
Dissociative symptoms are associated with a range of negative outcomes, yet little is understood about how adolescents experience dissociation in their daily lives. This study aimed to describe adolescents’ dissociative symptoms from the perspective of adolescents, their parents, and their treating clinicians.
This study described the rehabilitation services accessed by children with stroke following acute admission to two Australian paediatric tertiary hospitals prior to the implementation of clinical practice guidelines. It also evaluated quality-of-care indicators for inpatient rehabilitation within these two settings.
Language is significant for communicating knowledge across cultures and generations and has the power to attribute meanings and alter our worldviews.
The identification of a COPD etiotype associated with preterm birth (COPD-developmental) has expedited calls for intervention strategies that may improve health outcomes for survivors of preterm birth (<37 weeks' gestation). Pulmonary-rehabilitation style training interventions achieve physiological and symptom improvement in older people with COPD, but whether similar training interventions are suitable for young people is unclear. We sought to understand the perceived need and requirements of an exercise training intervention for children, adolescents and adults born preterm.
Measures of autistic traits are only useful – for pre-diagnostic screening, exploring individual differences, and gaining personal insight – if they efficiently and accurately assess autism as currently conceptualised while maintaining psychometric validity across different demographic groups. We recruited 1322 autistic and 1279 non-autistic adults who varied in autism status (non-autistic, diagnosed autistic, self-identifying autistic) and gender (cisgender men, cisgender women, gender diverse) to assess the psychometric properties of the Comprehensive Autistic Trait Inventory, a recently developed measure of autistic traits that examines six trait domains using 42 self-report statements.
Neonatal retrieval networks have adopted time-centric quality metrics as Key Performance Indicators (KPI) for setting and comparing benchmarking standards. Quicker launch time (departure from base), an essential KPI, enables neonatal retrieval teams to rapidly provide higher-level care to sick infants. The Newborn Emergency Transport Services of Western Australia (NETS WA) facilitates neonatal transfers across largest global retrieval area necessitating quicker team launch times for urgent retrievals. NETS WA conducted a quality improvement (QI) study to quicken team launch times for urgent retrievals.
Rare diseases (RD) are conditions affecting fewer than 1 in 2000 persons, with over 7000 largely genetic RDs affecting 3.5 %-5.9 % of the global population, or approximately 262.9–446.2 million people. The substantial healthcare burden and costs, such as the $1 trillion annual expense in the USA, highlight the urgent need for improved RD management. The International Rare Diseases Research Consortium (IRDiRC) addresses this need through global collaboration, aiming for timely and accurate diagnosis, development of 1000 new therapies, and methodologies to measure impact by 2027.