Perspectives of Caregivers on Access to Health Care for Children with CKD.

Introduction: Inequitable access to health care based on demographic factors such as ethnicity, socioeconomic status and geographical location has been consistently found in children with chronic kidney disease (CKD). However, little is known about the perspectives of caregivers on accessing health care. We described caregivers' perspectives on accessing health care for children with CKD from socioeconomically disadvantaged backgrounds and/or rural or remote areas.

The cultural safety of research reports on primary healthcare use by Indigenous Peoples: a systematic review.

Introduction: Community-driven research in primary healthcare (PHC) may reduce the chronic disease burden in Indigenous peoples. This systematic review assessed the cultural safety of reports of research on PHC use by Indigenous peoples from four countries with similar colonial histories.

Methods: Medline, CINAHL and Embase were all systematically searched from 1st January 2002 to 4th April 2023.

School attendance and sport participation amongst children with chronic kidney disease: a cross-sectional analysis from the Kids with CKD (KCAD) study.

Background: School attendance and life participation, particularly sport, is a high priority for children with chronic kidney disease (CKD). This study is aimed at assessing the association between CKD stage, sports participation, and school absences in children with CKD.

Methods: Using data from the binational Kids with CKD study (ages 6-18 years, n = 377), we performed multivariable regression to evaluate the association between CKD stage, school absences, and sports participation.

Sociodemographic Drivers of Donor and Recipient Gender Disparities in Living Kidney Donation in Australia.

Background: Females account for 60% of all living kidney donors worldwide. We defined the proportion of female to male donors for living donor kidney transplantation stratified by recipient gender, and explored the factors associated with female kidney donation.

Methods: Data from the ANZDATA (Australian and New Zealand Dialysis and Transplantation) and ANZOD (Australian and New Zealand Organ Donor) registries (2002-2019) were used to identify the sociodemographic characteristics and their interactions associated with living donation from female donors.

Protocol for a nested case-control study design for omics investigations in the Environmental Determinants of Islet Autoimmunity cohort.

The Environmental Determinants of Islet Autoimmunity (ENDIA) pregnancy-birth cohort investigates the developmental origins of type 1 diabetes (T1D), with recruitment between 2013 and 2019. ENDIA is the first study in the world with comprehensive data and biospecimen collection during pregnancy, at birth and through childhood from at-risk children who have a first-degree relative with T1D. Environmental exposures are thought to drive the progression to clinical T1D, with pancreatic islet autoimmunity (IA) developing in genetically susceptible individuals.

Longitudinal assessment of the health-related quality of life of children and adolescents with chronic kidney disease.

In this multi-center longitudinal cohort study conducted in Australia and New Zealand, we assessed the trajectories of health-related quality of life (HRQoL) in children with chronic kidney disease (CKD) over time. A total of 377 children (aged 6-18 years) with CKD stages 1-5 (pre-dialysis), dialysis, or transplant, were followed biennially for four years. Multi Attribute Utility (MAU) scores of HRQoL were measured at baseline and at two and four years using the McMaster Health Utilities Index Mark 3 tool, a generic multi-attribute, preference-based system.

Clinical outcomes of adults and children with cystic fibrosis during the COVID-19 pandemic.

Background: The onset of the COVID-19 pandemic was associated with restricted community movement and limited access to healthcare facilities, resulting in changed clinical service delivery to people with cystic fibrosis (CF). This study aimed to determine clinical outcomes of Australian adults and children with CF in the 12-months following the onset of the COVID-19 pandemic.

Methods: This longitudinal cohort study used national registry data.

Dietary intake in children on the autism spectrum is altered and linked to differences in autistic traits and sensory processing styles.

Diets of children and adolescents on the autism spectrum often differ when compared to their non-autistic peers. Most dietary studies have been limited by small sample sizes and rarely assess the heterogeneity of autism. Addressing this gap, this study compared the anthropometrics, dietary composition, dietary quality, and food variety of 154 Australian children and adolescents on the spectrum and 213 non-autistic children (71 siblings and 142 unrelated controls).

Early PARacetamol (EPAR) Trial: A Randomized Controlled Trial of Early Paracetamol to Promote Closure of the Ductus Arteriosus in Preterm Infants.

Introduction: This study aimed to investigate whether early treatment with paracetamol reduces the number of infants requiring intervention for patent ductus arteriosus (PDA) and assess the safety profile of paracetamol during the early postnatal period.

Methods: This was a double-blind, parallel, randomized, placebo-controlled trial. Preterm infants born at <29-week gestation with a ductus arteriosus >0.

Propranolol's effects on the sleep of infants with hemangiomas: A prospective pilot study.

Objective: To assess propranolol's impact on sleep when used in infants and toddlers with infantile hemangioma (80% under 6 months old).

Methods: Parents and caregivers of infants and toddlers with infantile hemangioma presenting to a tertiary pediatric hospital's dermatology clinic and assessed by their dermatologist as requiring propranolol treatment were invited to participate. All participants completed an extended version of the Brief Infant Sleep Questionnaire (BISQ) prior to propranolol treatment initiation, which acted as the control, and 5 weeks after treatment commencement.

Evaluation of an educational video providing key messages for doctors to counsel families following a first afebrile seizure.

Aim: The aim was to evaluate an educational video in educating doctors on the key messages and follow-up pathways following a first afebrile seizure presentation. A multidisciplinary expert team developed the video (http://www.pennsw.

The impact of caring for children with posterior urethral valves.

Aim: To investigate and describe factors contributing to the impact of caring for a child with posterior urethral valves and to determine the extent to which families view their care as family-centred, and whether this can affect the impact of care.

Methods: A cross-sectional, survey-based study involving primary caregivers of children with posterior urethral valves. Caregivers completed the Impact on Family Scale (IOFS) and the Measure of Processes of Care (MPOC).

A randomized controlled trial comparing video-assisted informed consent with standard consent for Mohs micrographic surgery.

Background: There is a need for improvement in informed medical consent to address the lack of standardization and to increase patient engagement.

Objective: To investigate the use of a video to aid informed consent for Mohs micrographic surgery and evaluate patient understanding, satisfaction, anxiety, and time savings relative to verbal consent.

Methods: A 2-armed randomized controlled trial involving 102 patients compared video-assisted consent with a control group who underwent consent in the standard verbal manner.

Postpartum anal incontinence in women with and without obstetric anal sphincter injuries.

Introduction And Hypothesis: Postpartum anal incontinence is common and distressing for women. We sought to look at the prevalence of anal incontinence in women who sustained obstetric anal sphincter injuries (OASI) compared with women who did not, and factors leading to these symptoms during the postpartum period.

Methods: A total of 129 primiparous women sustaining OASI were compared with 131 women who did not (controls).

Vulvar quality of life index (VQLI) - A simple tool to measure quality of life in patients with vulvar disease.

Background/objectives: Vulvar disease leads to significant disease burden and reduced quality of life (QOL). However, vulvar disease-specific instruments to measure QOL are lacking. We developed the Vulvar Quality of Life Index (VQLI) to comprehensively and reproducibly assess symptomatic, psychosexual and physical aspects of vulvar disease.

Variables associated with grief and personal growth following the death of a child from cancer: A mixed method analysis.

This mixed method study explored parent and child characteristics that impact grief and personal growth in parents ( = 119) after a child dies from cancer in Australia. Medical components of a child's cancer care including radiation treatment, referral to palliative care, and location of death had a significant impact on levels of grief. Parents' gender, religious affiliation, and education level had a significant impact on levels of personal growth.

Identifying missed clinical opportunities for the earlier diagnosis of HIV in Australia, a retrospective cohort data linkage study.

Background: Treatment as prevention approaches for HIV require optimal HIV testing strategies to reduce undiagnosed HIV infections. In most settings, HIV testing strategies still result in unacceptably high rates of missed and late diagnoses. This study aimed to identify clinical opportunities for targeted HIV testing in persons at risk to facilitate earlier HIV diagnosis in New South Wales, Australia; and to assess the duration between the diagnosis of specific conditions and HIV diagnosis.