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0000-0002-1686-4458
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Research Topics
In Research Link Australia (RLA), "Research Topics" refer to ANZSRC FOR and SEO codes. These topics are either sourced from ANZSRC FOR and SEO codes listed in researchers' related grants or generated by a large language model (LLM) based on their publications.
Top 5 Research Topics
ANZSRC Field of Research (FoR)
Public Health and Health Services | Specialist Studies in Education | Epidemiology | Community Child Health | Public Policy | Public Health And Health Services Not Elsewhere Classified | Discourse And Pragmatics | Special Education and Disability | Special Education | Teacher Education: Special Education | Quality Management
ANZSRC Socio-Economic Objective (SEO)
Social Structure and Health | Health Inequalities | Families | Special Needs Education | Expanding Knowledge through Studies of Human Society | Child Health | Health and support services not elsewhere classified | Other social development and community services | Special education | Early childhood education |
Related Links
Publications
Protocol for a prospective longitudinal study investigating the participation and educational trajectories of Australian students with autism
Publisher: BMJ
Date: 2018
Typical Pubertal Timing in an Australian Population of Girls and Boys with Autism Spectrum Disorder
Publisher: Springer Science and Business Media LLC
Date: 30-08-2017
DOI: 10.1007/S10803-017-3281-3
Abstract: Secondary data analyses from the Longitudinal Study of Australian Children Kindergarten cohort were performed to understand any alterations in pubertal timing in Autism Spectrum Disorder (ASD) in a population s le. Timing of parent-reported pubertal events (ages 8-9, 10-11, 12-13 years), and self-report (14-15 years N = 3454 no ASD, N = 94 with ASD) included breast development, menses, skin changes, growth spurt, body hair, deepening voice and facial hair. Survival analyses and Cox regression controlling for covariates showed no evidence of altered pubertal onset amongst males with ASD. In contrast to some past studies, there was also no difference in pubertal timing in females with ASD. These exploratory findings suggest typical puberty timing in a population representative group of young people with ASD.
Quality of life beyond diagnosis in intellectual disability – Latent profiling
Publisher: Elsevier BV
Date: 10-2022
DOI: 10.1016/J.RIDD.2022.104322
Abstract: To compare quality of life (QOL) across diagnoses associated with intellectual disability, construct QOL profiles and evaluate membership by diagnostic group, function and comorbidities. Primary caregivers of 526 children with intellectual disability (age 5-18 years) and a diagnosis of cerebral palsy, autism spectrum disorder, Down syndrome, CDKL5 deficiency disorder or Rett syndrome completed the Quality of Life Inventory-Disability (QI-Disability) questionnaire. Latent profile analysis of the QI-Disability domain scores was conducted. The mean (SD) total QOL score was 67.8 (13.4), ranging from 60.3 (14.6) for CDD to 77.5 (11.7) for Down syndrome. Three classes describing domain scores were identified: Class 1 was characterised by higher domain scores overall but poorer negative emotions scores Class 2 by average to high scores for most domains but low independence scores and Class 3 was characterised by low positive emotions, social interaction, and leisure and the outdoors scores, and extremely low independence scores. The majority of in iduals with autism spectrum disorder and Down syndrome belonged to Class 1 and the majority with CDKL5 deficiency disorder belonged to Class 3. Those with better functional abilities (verbal communication and independent walking were predominately members of Class 1 and those with frequent seizures were more often members of Class 2 and 3. The profiles illustrated variation in QOL across a erse group of children. QOL evaluations illustrate areas where interventions could improve QOL and provide advice to families as to where efforts may be best directed.
Delineating the autistic phenotype in children with neurofibromatosis type 1
Publisher: Springer Science and Business Media LLC
Date: 04-01-2022
DOI: 10.1186/S13229-021-00481-3
Abstract: Existing research has demonstrated elevated autistic behaviours in children with neurofibromatosis type 1 (NF1), but the autistic phenotype and its relationship to other neurodevelopmental manifestations of NF1 remains unclear. To address this gap, we performed detailed characterisation of autistic behaviours in children with NF1 and investigated their association with other common NF1 child characteristics. Participants were drawn from a larger cross-sectional study examining autism in children with NF1. The population analysed in this study scored above threshold on the Social Responsiveness Scale-Second Edition (T-score ≥ 60 51% larger cohort) and completed the Autism Diagnostic Interview-Revised (ADI-R) and/or the Autism Diagnostic Observation Schedule-Second Edition (ADOS-2). All participants underwent evaluation of their intellectual function, and behavioural data were collected via parent questionnaires. The study cohort comprised 68 children (3–15 years). Sixty-three per cent met the ADOS-2 ‘autism spectrum’ cut-off, and 34% exceeded the more stringent threshold for ‘autistic disorder’ on the ADI-R. Social communication symptoms were common and wide-ranging, while restricted and repetitive behaviours (RRBs) were most commonly characterised by ‘insistence on sameness’ (IS) behaviours such as circumscribed interests and difficulties with minor changes. Autistic behaviours were weakly correlated with hyperactive/impulsive attention deficit hyperactivity disorder (ADHD) symptoms but not with inattentive ADHD or other behavioural characteristics. Language and verbal IQ were weakly related to social communication behaviours but not to RRBs. Lack of genetic validation of NF1, no clinical diagnosis of autism, and a retrospective assessment of autistic behaviours in early childhood. Findings provide strong support for elevated autistic behaviours in children with NF1. While these behaviours were relatively independent of other NF1 comorbidities, the importance of taking broader child characteristics into consideration when interpreting data from autism-specific measures in this population is highlighted. Social communication deficits appear similar to those observed in idiopathic autism and are coupled with a unique RRB profile comprising prominent IS behaviours. This autistic phenotype and its relationship to common NF1 comorbidities such as anxiety and executive dysfunction will be important to examine in future research. Current findings have important implications for the early identification of autism in NF1 and clinical management.
Feasibility and acceptability of an online acceptance and commitment therapy group for parents caring for a child with cerebral palsy
Publisher: Informa UK Limited
Date: 12-10-2020
Helping refugee children thrive: what we know and where to next
Publisher: BMJ
Date: 23-12-2017
The autism spectrum disorder phenotype in children with tuberous sclerosis complex: A systematic review and meta‐analysis
Publisher: Wiley
Date: 20-06-2022
DOI: 10.1111/DMCN.15307
Abstract: To investigate the phenotype in autistic children with tuberous sclerosis complex (TSC), specifically autism spectrum disorder (ASD) severity and characteristics, intellectual ability, adaptive and executive function, language skills, attention‐deficit/hyperactivity disorder features, and internalizing and externalizing behaviours. MEDLINE, Embase, and the Cochrane Library were searched up to March 2021. Studies that investigated predefined phenotypic factors in children with TSC‐ASD were included according to the Preferred Reporting Items for Systematic review and Meta‐Analysis Protocols (PRISMA‐P) guidelines. Two authors independently reviewed titles, abstracts, full texts, and extracted the data. Risk of bias and GRADE assessments were completed. Thirty‐four studies with 3160 children with TSC, 30% with ASD, were included. Meta‐analysis found that 90% (95% confidence interval 86%–94%) of children with TSC‐ASD have an intellectual disability. There was some evidence to suggest that young children with TSC‐ASD and idiopathic ASD have a similar pattern of severity and behaviour. Overall, data about phenotypic characteristics were limited. A greater proportion of children with TSC‐ASD are reported to have an intellectual disability than children with idiopathic ASD. Early intervention should consider the needs of children with a high likelihood of intellectual disability. Research is needed to better understand the impacts of intellectual disability and other co‐occurring difficulties on adaptive function, participation, and quality of life in TSC‐ASD. Most children with tuberous sclerosis complex (TSC) and autism spectrum disorder (ASD) have an intellectual disability. TSC‐ASD early intervention planning should consider the high likelihood of intellectual disability. Quality of life and the functional impact of intellectual disability in TSC‐ASD are not understood. Little is known about co‐occurring difficulties in TSC‐ASD.
Inequities in Children's Reading Skills: The Role of Home Reading and Preschool Attendance
Publisher: Elsevier BV
Date: 08-2021
Exploring the routine vaccination experience of Australian autistic children and their families: A qualitative study
Publisher: Elsevier BV
Date: 12-2022
Brief history and user's guide to the Australian National Disability Insurance Scheme
Publisher: Wiley
Date: 14-10-2018
DOI: 10.1111/JPC.13748
Functioning, participation, and quality of life in children with intellectual disability: an observational study
Publisher: Wiley
Date: 30-08-2020
DOI: 10.1111/DMCN.14657
Abstract: To investigate associations between functioning, community participation, and quality of life (QoL) and identify whether participation mediates the effects of functioning on QoL. The caregivers of 435 children (211 females, 224 males mean age 12y SD 3y 11mo age range 5–18y) with intellectual disability and autism spectrum disorder, cerebral palsy, Down syndrome, or Rett syndrome reported on their child’s functioning (dependence for managing personal needs, mobility, communication, eye contact when speaking), frequency of participation, and QoL. Linear regression and mediation analyses were used to evaluate the relationships between child functioning, participation, and QoL. Children with greater dependency for managing personal needs and limited eye contact when speaking experienced poorer QoL. Less impaired functioning was associated with more frequent participation, which, in turn, was associated with a 3‐point gain in QoL for each additional point in frequency of participation (coefficient=2.67, 95% confidence interval 1.56–3.78). The effect of impaired functioning on QoL was partially mediated by participation in children with greater dependency in managing personal needs and those with mildly impaired communication. Greater levels of impairments with poorer functioning, notably a high level of dependence, were associated with poorer QoL. Poorer QoL can be partly explained by less frequent community participation.
A Capacity Building Program to Improve the Self-Efficacy of Key Workers to Support the Well-Being of Parents of a Child with a Disability Accessing an Early Childhood Intervention Service: Protocol for a Stepped-Wedge Design Trial
Publisher: JMIR Publications Inc.
Date: 03-04-2019
DOI: 10.2196/12531
Hormonal Treatment in Young People With Gender Dysphoria: A Systematic Review
Publisher: American Academy of Pediatrics (AAP)
Date: 04-2018
Abstract: Hormonal interventions are being increasingly used to treat young people with gender dysphoria, but their effects in this population have not been systematically reviewed before. To review evidence for the physical, psychosocial, and cognitive effects of gonadotropin-releasing hormone analogs (GnRHa), gender-affirming hormones, antiandrogens, and progestins on transgender adolescents. We searched Medline, Embase, and PubMed databases from January 1, 1946, to June 10, 2017. We selected primary studies in which researchers examined the hormonal treatment of transgender adolescents and assessed their psychosocial, cognitive, and/or physical effects. Two authors independently screened studies for inclusion and extracted data from eligible articles using a standardized recording form. Thirteen studies met our inclusion criteria, in which researchers examined GnRHas (n = 9), estrogen (n = 3), testosterone (n = 5), antiandrogen (cyproterone acetate) (n = 1), and progestin (lynestrenol) (n = 1). Most treatments successfully achieved their intended physical effects, with GnRHas and cyproterone acetate suppressing sex hormones and estrogen or testosterone causing feminization or masculinization of secondary sex characteristics. GnRHa treatment was associated with improvement across multiple measures of psychological functioning but not gender dysphoria itself, whereas the psychosocial effects of gender-affirming hormones in transgender youth have not yet been adequately assessed. There are few studies in this field and they have all been observational. Low-quality evidence suggests that hormonal treatments for transgender adolescents can achieve their intended physical effects, but evidence regarding their psychosocial and cognitive impact are generally lacking. Future research to address these knowledge gaps and improve understanding of the long-term effects of these treatments is required.
Screen time of infants in Sydney, Australia: a birth cohort study
Publisher: BMJ
Date: 10-2016
Prevalence and factors associated with parental concerns about development detected by theParents’ Evaluation of Developmental Status (PEDS)at 6-month, 12-month and 18-month well-child checks i
Publisher: BMJ
Date: 09-2016
Carer perspectives of a transition to adult care model for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities
Publisher: Wiley
Date: 18-08-2022
DOI: 10.1111/CCH.13040
Abstract: Transition to adult care for adolescents with an intellectual disability and/or autism spectrum disorder with coexisting mental health disorders, often termed ‘dual disability’, is complex. It requires a family‐centred approach, with collaboration among health, disability and social services and early planning. To describe carer perspectives of transition to adult care and the outcomes of a transition support intervention, Fearless, Tearless Transition , for adolescents with dual disabilities piloted at a tertiary children's hospital. Carers of adolescents with a dual disability were invited to complete a survey at the commencement of their participation in the Fearless, Tearless Transition model, and again at the conclusion of the project. Within this intervention, carers and adolescents were encouraged to attend dedicated transition clinics and participate in a shared care general practitioner (GP) and paediatrician process. One hundred and fifty‐one carers of adolescents with dual disabilities were included in Fearless, Tearless Transition . Of this cohort, 138 adolescents and their carers received support in a dedicated transition clinic with 99 carers completing the initial survey at the commencement of the model. Eighty‐two per cent of carers reported moderate to high levels of anxiety about transitioning from paediatric to adult care with 39% feeling ‘unprepared’ about transition. Eighty‐one per cent reported having inadequate access to respite care with 47% reporting a lack of access to services in the community and 56% expressing dissatisfaction with their GPs. One hundred and two families participated in the shared care process with 80 GPs and 33 paediatricians. Twenty‐two carers completed the second survey reporting a modest but significant improvement in preparedness for transition to adult care. This study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early, centralized transition planning, consistent methods of assessing adolescent and carer needs and shared care.
Understanding the Diversity of Pharmacotherapeutic Management of ADHD With Co-occurring Autism: An Australian Cross-Sectional Survey
Publisher: Frontiers Media SA
Date: 27-06-2022
DOI: 10.3389/FPSYT.2022.914668
Abstract: Attention deficit hyperactivity disorder (ADHD) frequently co-occurs with other neurodevelopmental diagnoses, such as autism spectrum disorder (autism), which can make clinical decision making around symptom management challenging for clinicians. There is a paucity of research examining pharmacotherapeutic management of children who have ADHD with co-occurring diagnoses. We aimed to report on the co-occurring diagnoses and symptom profile of children, and report on medication use, stratified by ADHD, autism and ADHD + autism diagnoses. Caregivers of 505 children (2–18 years) with ADHD ( n = 239), autism ( n = 117), and co-occurring ADHD + autism ( n = 149) completed a questionnaire on current medication use and clinical rating scales about their child's symptoms, as part of a broader project investigating diagnosis and management of symptoms in children with ADHD or autism. The parents of the ADHD group reported a higher proportion of their children had learning disorders (17.15%) and speech and language disorders (4.60%) compared to the parents of the autism and ADHD + autism groups. Parents of the ADHD + autism group reported higher proportions of intellectual disability (5.37%), oppositional defiant disorder (20.13%), anxiety (38.93%), depression (6.71%) and genetic conditions (3.36%) in their children, in comparison to the parents of the ADHD and autism groups. Children with ADHD were reported to be taking a higher proportion of psychotropic medication (90%), followed by ADHD + autism (86%) and autism (39%). The parents of children with ADHD + autism reported a higher proportion of non-stimulant ADHD medication (25.5%), antipsychotic (18.79%), antidepressant (22.15%) and melatonin (31.54%) use by their children, compared to the parents of the ADHD and autism groups. A similar proportion of children with ADHD + autism and ADHD were reported to be taking medication. However, the types of medication taken were different, as expected with reported co-occurring diagnoses. The complexity of symptoms and diagnoses in ADHD + autism warrants targeted research to optimize management and therapeutic outcomes.
An intervention to improve the self-efficacy of key workers to support parental wellbeing at an early childhood intervention service in Australia: a stepped wedged randomized cluster trial
Publisher: Informa UK Limited
Date: 02-09-2023
Comparing emergency department presentations among children with cerebral palsy with general childhood presentations: a data linkage study
Publisher: Wiley
Date: 08-08-2017
DOI: 10.1111/DMCN.13518
Abstract: The aims of this study were to estimate the proportion of emergency department presentations attributable to children with cerebral palsy (CP), investigate the frequency of emergency department presentations in a CP cohort, and compare emergency department presentations among children with CP with those of other children. This was a retrospective cohort study. The Victorian Cerebral Palsy Register was linked to the Victorian Emergency Minimum Dataset. Data on emergency department presentations for the CP cohort occurring between 2007 and 2014 and population control data were obtained. The CP cohort (n=1748) had 7015 emergency department presentations during the 7-year period, accounting for 0.4% of the 1.69 million age-specific presentations during that time. The number of annual presentations per 1000 children rose with increasing CP severity. Compared with presentations among the general population, higher proportions of presentations among the CP cohort were preceded by ambulance arrivals (27% vs 8%), triaged as urgent (66% vs 32%), and required hospital admission (38% vs 12%). The marked differences in presentations between the CP cohort and the general population in the proportions that were urgent and required ambulance arrivals and hospital admissions was an important finding. Strategies to ensure appropriate use of services, including encouragement to seek earlier assistance from primary care providers, may prevent problems escalating to the need for urgent care. Children with cerebral palsy (CP) account for 0.4% of childhood emergency department presentations. More emergency department presentations among children with CP require ambulance arrival. More CP emergency department presentations are urgent and require hospital admission. Traditional emergency department triage scales seem less accurate for this group.
Randomised Controlled Trial of a Behavioural Sleep Intervention, ‘Sleeping Sound’, for Autistic Children: 12-Month Outcomes and Moderators of Treatment
Publisher: Springer Science and Business Media LLC
Date: 21-11-2022
Mental health care needs and preferences for mothers of children with a disability
Publisher: Wiley
Date: 12-02-2018
DOI: 10.1111/CCH.12556
Abstract: Mothers of children with a disability are at increased risk of poor mental health compared with mothers of typically developing children. The aim of the study was to describe the mental health care needs and preferences for support of mothers of children and young people aged 0-25 years with a disability. A cross-sectional study was used, using an online survey with 294 mothers of children with a disability. Questions were asked about mental health, perceived need for support, barriers to accessing mental health care, and preferences for support. Descriptive and chi-squared analyses were performed. High rates of mental ill health were self-identified in the previous 12 months, with reported clinically significant depression (44%), anxiety (42%), and suicidality (22%). Nearly half (48%) of the mothers reported high to very high psychological distress. Although 75% of mothers perceived a need for professional support, only 58% attempted to access this. Key barriers to accessing support were caregiving duties making it difficult to schedule appointments (45%) and not perceiving the mental health problem as serious enough to require help (36%). In idual counselling was the preferred type of support (66%) followed by professionally guided relaxation (49%) and education about mental health (47%). Support was considered most critical at the time of diagnosis and during medical intervention for their child. Although mental health problems were common and mothers perceived the need for professional help, several key barriers were preventing mothers from accessing help. Our study suggests that improving mothers' knowledge of when and where to seek help (mental health literacy) may encourage their access to support. There also needs to be more accessible treatment to mothers given the high care demands that are placed upon them.
Use of Home Videos for Investigation of Early Development and Skill Loss in Children Diagnosed with Autistic Regression: a Systematic Review
Publisher: Springer Science and Business Media LLC
Date: 16-02-2021
Refugee children and their health, development and well-being over the first year of settlement: A longitudinal study
Publisher: Wiley
Date: 29-05-2017
DOI: 10.1111/JPC.13551
Abstract: This study aimed to describe refugee children, their families and settlement characteristics, and how their development and social-emotional well-being change over time. We conducted a longitudinal study of 61 refugee children (6 months to 15 years) in an Australian setting, over 2009-2013 and measured child, family and settlement factors as well as physical health, development and social-emotional well-being (Strengths and Difficulties Questionnaire, SDQ). Questionnaires were completed with parents of 54 (89%) children at year 2 and 52 (100%) at year 3. Forty percent of parents had low levels of education, 30% of fathers were absent on arrival, 13% of children were born in refugee c s and 11% of parents self-disclosed previous trauma. Over time, there was increased parental employment (P = 0.001), improved English proficiency for partners (P = 0.02) and reduced stressful life events in the last 12 months (P = 0.003). At years 2 and 3, parents were studying English (96% 76%), accessing government financial support (96% 100%) and primary health care (98% 87%), and feeling supported by their own (78% 73%) or the general (69% 63%) community. Fifteen percent of children had a chronic disease, and 13% were obese and overweight. In pre-school children, 27% had mild developmental problems in year 2 all were normal by year 3. Abnormal SDQ total difficulties scores reduced over time from 13 to 6% of children but this did not reach significance. Most refugee children have developmental and well-being outcomes within the normal range by year 3. However, a minority of children have persistently poor social-emotional outcomes.
Comorbidities and quality of life in children with intellectual disability
Publisher: Wiley
Date: 04-05-2021
DOI: 10.1111/CCH.12873
Abstract: Many children with intellectual disability live with medical comorbidities. This study examined the impacts of comorbidities on quality of life (QOL) of children with intellectual disabilities and whether impacts varied with caregiver perceptions that medical needs had been met. Primary caregivers of 447 children (aged 5–19 years) with an intellectual disability reported on their child's medical comorbidities and the extent to which they perceived their child's medical needs had been met in a cross‐sectional observational study. The Quality of Life Inventory‐Disability was used to measure QOL on a 100‐point scale. Linear regression models including interaction terms were used to evaluate their associations. Parent‐reported recurrent child pain (−4.97, 95% CI −8.21, −1.72), night‐time sleep disturbances (−4.98, 95% CI −7.23, −2.73), daytime somnolence (−8.71, 95% CI −11.30, −2.73), seizures that occurred at least weekly (−7.59, 95% CI −13.50, −1.68) and conservatively managed severe scoliosis (−7.39, 95% CI −12.97, −1.81) were negatively associated with child QOL. Despite the majority of parents (~70%) perceiving that their child's medical needs had been met to a great extent, this did not significantly moderate the association between any comorbidities and QOL. Comorbidities were common and had marked associations with QOL. Evaluation and management of pain and sleep disturbance continue to be high priorities in improving QOL of young people with intellectual disabilities. Further research on the optimal methods of managing these comorbidities is warranted.
Parent-observed thematic data on quality of life in children with autism spectrum disorder
Publisher: SAGE Publications
Date: 26-10-2019
Abstract: Domains of quality of life in children with autism spectrum disorder have not previously been explored and there has been no quality of life measure developed for this population. Our study investigated parent observations to identify the domains important to children with autism spectrum disorder who also had an intellectual disability. In all, 21 parents (19 mothers, 2 fathers) of children with autism spectrum disorder (aged 6–17 years) participated in a qualitative study to discuss their child’s quality of life. Thematic analysis using a grounded theory framework was conducted and 10 domains emerged in relation to health and well-being, capacity to perform and develop skills in daily life, and connections with the community and environment. Unique aspects of quality of life included varying levels of social desire, consistency of routines, and time spent in nature and the outdoors, which are not comprehensively captured in existing measures. Parent observations provide an initial framework for understanding quality of life in autism spectrum disorder and support the development of a new measure for this population.
Simulation-based education for staff managing aggression and high-risk behaviors in children with autism spectrum disorder in the hospital setting: A pilot and feasibility cluster randomized controlled trial
Publisher: Sciedu Press
Date: 15-07-2021
Abstract: Background and objective: Aggression and high-risk behaviors, which can result in behavioral emergencies, are common in children with autism and can be magnified in the hospital environment. Children with autism, with or without intellectual disability, have complex communication needs which require a sophisticated level of knowledge, understanding and skill from health care professionals. Pediatric acute care nursing staff are often not trained and lack confidence in managing children with autism. The purpose of this study was to conduct a pilot and feasibility cluster randomized controlled trial (RCT) of simulation-based education for staff in managing behavioral emergencies with autism spectrum disorder (ASD) in the hospital setting.Methods: This study used a mixed method, to explore the acceptability and feasibility of delivering a large-scale cluster RCT and assess trial processes including recruitment, completion rates, contamination, and outcome measures. The simulation-based training format comprised two scenarios involving an adolescent with autism, intellectual disability and aggressive behaviors. Two pediatric wards of similar size and patient complexity were selected to participate in the study and randomized to receive either simulation-based education plus web-based education materials or web-based education materials only. Results: The RCT design is feasible with recruitment, acceptability and completion rates reaching target. Self-perceived baseline levels of confidence in managing aggression in children were mid-range and lower for children with autism and intellectual disability. Forty to fifty percent of intervention participants rated the training highly in terms of developing skills and knowledge respectively. The mean group score for observer ratings of de-escalation across four simulations was 20 out of a possible 35. Data for ward aggression were not collected.Conclusions: Simulation-based education is an acceptable training format for acute care pediatric nurses. This study is feasible to conduct as a cluster RCT with some modifications to this protocol including assessment of baseline differences in confidence. Observer ratings of de-escalation skills indicated that more than one episode of training may be required for acute care pediatric staff to successfully de-escalate aggressive incidents. As such, we will use repeated simulation scenario exercises for each intervention group in the next trial.
Does pre-school developmental assessment agree with later intellectual assessment? A retrospective cohort study
Publisher: Wiley
Date: 25-05-2023
DOI: 10.1111/JPC.16428
Abstract: This study sought to assess the association between early developmental assessment of toddlers with idiopathic global developmental delay (GDD) and their later intelligence test scores. Toddlers with idiopathic GDD attending a community clinic over a 6‐year period were assessed initially using the Griffiths Mental Development Scales – Extended Revised version (GMDS‐ER) and later completing formal intelligence testing using the Stanford‐Binet Intelligence Scale – 5th Edition (SB5) at age 4–6 years. Spearman's correlation was used to assess the association of quotient scores across the tools. The composite quotient (GQ) and the subscale quotients of GMDS‐ER were correlated with the full‐scale IQ (FSIQ), verbal and non‐verbal IQ scores from the SB5. Thirty of 153 children assessed at the clinic were eligible for the study. The correlation between GMDS‐ER GQ and later SB5 FSIQ was strong ( r = 0.86, P 0.001). The subscales' associations were moderate to strong (0.48–0.71). Eighty‐six percent (86%) of children with delay on GMDS‐ER GQ were found later to be in the impaired category based on the FSIQ of the SB5. There was a strong association between toddlers' early developmental quotients and later IQ scores for children with idiopathic GDD, though agreement between early GDD diagnoses and later intellectual disability is not absolute. In idualised care is needed around prognostic advice and recommendations to caregivers and families in the early years, so they may effectively plan for interventions, supports and later reassessment to optimise their child's development and learning.
Hospital admissions in children with cerebral palsy: a data linkage study
Publisher: Wiley
Date: 30-11-2016
DOI: 10.1111/DMCN.13350
Abstract: The overall aim was to investigate the feasibility and utility of linking a cerebral palsy (CP) register to an administrative data set for health services research purposes. We sought to compare CP hospital admissions to general childhood population admissions, and identify factors associated with type and frequency of admissions in a CP cohort. The CP register for Victoria, Australia was linked to the state's hospital admissions database. Data pertaining to the admissions of a CP cohort (n=1748) that took place between 2007 and 2014 were extracted. Population data were also obtained. Overall, 80% of the CP cohort (n=1401) had at least admission between 2007 and 2014, accounting for 11 012 admissions or 1.5% of all admissions in their age group. Compared to general population admissions, CP admissions were more costly and more likely to be elective (66% vs 57% p<0.001), medical (71% vs 57% p<0.001), and to take place in metropolitan hospitals (92% vs 78% p<0.001). Increased CP severity and complexity were associated with having more admissions and a higher proportion of admissions attributable to respiratory illness. By linking with administrative data sets, CP registers may be useful for health services research and inform health service delivery.
Predictors of developmental surveillance completion at six months of age in south western Sydney
Publisher: Wiley
Date: 12-2016
DOI: 10.1111/CCH.12425
Oral medication prescription practices of tertiary‐based specialists for dystonia in children with cerebral palsy
Publisher: Wiley
Date: 06-11-2017
DOI: 10.1111/JPC.13754
Abstract: To examine current clinical practice for prescribing medications for children with dystonic cerebral palsy (CP) by medical doctors working at a tertiary care centre. Rehabilitation and developmental paediatric specialists completed: (i) a custom-designed online cross-sectional survey capturing their usual prescribing patterns and (ii) one-page questionnaires detailing medication prescription for each child with CP who they started on a new medication for dystonia over a 12-month period. Eleven participating doctors ranged in experience in managing children with CP from less than 5 years to more than 20 years. The cross-sectional survey showed that most doctors used more than one medication, with six making choices taking into account four or more different medications. Oral baclofen was used by all doctors and was the first choice of 10 of 11. Prospective surveys from 57 children showed that medication was prescribed mainly for children aged 3-10 years (n = 35/57), classified within Gross Motor Function Classification System levels IV and V (n = 40/57) and with a mixed movement disorder (n = 38/57). Gabapentin and baclofen were the most frequently prescribed (n = 21/57 and 19/57, respectively), with other drugs used less frequently. Dosage regimens varied between and within doctors, particularly for the use of gabapentin and diazepam. Oral medication prescribing practices varied among doctors managing children with dystonic CP at a tertiary care hospital, particularly with respect to dosing. There is a need for clinical guidelines for medication prescription to be developed based on best evidence and consensus by clinical experts.
Behavioural emergencies in a paediatric hospital environment
Publisher: Wiley
Date: 11-02-2022
DOI: 10.1111/JPC.15896
Abstract: Aggression and high‐risk behaviours triggered by children in paediatric hospitals are increasing globally. There is a paucity of research describing behavioural emergencies in paediatric acute care settings. We conducted a 1‐year retrospective study of behavioural emergencies that triggered an emergency response team attendance in a quaternary paediatric hospital. In 2018, 218 children triggered 1050 behavioural emergencies, which utilised 386 h of the emergency response team time. Thirty‐three (15%) children triggered more than five activations each (range 6–272) and nearly half (16) were children with autism spectrum disorder or intellectual disability. More than 80% of children who triggered an emergency team response also had at least one psychiatric co‐morbidity. Behavioural emergencies, by definition, put staff, children or their families at risk. They occur frequently in hospital with some children repeating these behaviours despite allocation of resources and expertise. New approaches to prevention and amelioration are needed.
Health outcomes of school-aged children conceived using donor sperm
Publisher: Elsevier BV
Date: 10-2017
DOI: 10.1016/J.RBMO.2017.06.012
Abstract: The use of donor sperm is increasing, yet limited information is available about the health and development of children conceived from donor sperm. This retrospective descriptive study aimed to assess health and development in a cohort of school-aged children who were conceived using donor sperm. Participants included 224 children, aged 5-11 years, who were conceived using donor sperm. Participants' mothers completed a questionnaire comprising validated scales examining their child's current and past physical, psychosocial and mental health, healthcare needs and child development, as well as the mothers' health and wellbeing. At the conclusion of the study, the response rate was 296 out of 407 (72.7%), with a participation rate of 224 out o 407 (55.0%). Compared with the normative Australian population, sperm donor-conceived children had similar physical, psychosocial and mental health and development. A modest increase in healthcare needs was evident. The study concludes that in school-aged children conceived using donor sperm, most aspects of child health and wellbeing are similar to the general population.
Development of the Fearless, Tearless Transition model of care for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities
Publisher: Wiley
Date: 17-12-2020
DOI: 10.1111/DMCN.14766
Abstract: First, to understand the barriers to achieving effective transition and the supports required from the perspective of parents and carers, adolescents with intellectual disability and/or autism spectrum disorder and co‐existing mental health disorders (often termed ‘dual disability’), and those who provide services to this group. Second, to develop an informed model of shared care to improve the transition of adolescents with dual disabilities. Carers and a young adult with a dual disability were surveyed about their experience of transition care. Other key stakeholders including paediatricians, general practitioners, and policy makers were also interviewed. These data informed the model of care. Paediatricians and general practitioners reported difficulties establishing working relationships to foster smooth transitions, and carers reported lacking a regular general practitioner with adequate expertise to care for people with dual disabilities. A process of shared care between paediatricians and general practitioners was developed and initiated by a dedicated transition manager, who assisted with care coordination and service linkages. Standardized clinical assessment tools were also introduced to determine patient and carer support needs. This study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early transition planning, consistent methods of assessing patient and carer needs, and shared care. Adolescents with co‐occurring disabilities require a collaborative health and disability service interface. Fearless, Tearless Transition is a new approach to transitioning adolescents with dual disabilities from paediatric to adult care. Carers of adolescents with dual disabilities require support navigating and negotiating services. Engaging general practitioners and paediatricians in shared care early during the transition process is essential.
Measurement properties of instruments that assess participation in young people with autism spectrum disorder: a systematic review
Publisher: Wiley
Date: 12-12-2017
DOI: 10.1111/DMCN.13631
Abstract: To systematically review the measurement properties of instruments assessing participation in young people with autism spectrum disorder (ASD). A search was performed in MEDLINE, PsycINFO, and PubMed combining three constructs ('ASD', 'test of participation', 'measurement properties'). Results were restricted to articles including people aged 6 to 29 years. The 2539 identified articles were independently screened by two reviewers. For the included articles, data were extracted using standard forms and their risk of bias was assessed. Nine studies (8 cross-sectional) met the inclusion criteria, providing information on seven different instruments. The total s le included 634 participants, with sex available for 600 (males=494 females=106) and age available for 570, with mean age for these participants 140.58 months (SD=9.11 range=36-624). Included instruments were the school function assessment, vocational index, children's assessment of participation and enjoyment references for activities of children, experience s ling method, Pediatric Evaluation of Disability Inventory, Computer Adaptive Test, adolescent and young adult activity card sort, and Patient-Reported Outcomes Measurement Information System parent-proxy peer relationships. Seven studies assessed reliability and validity good properties were reported for half of the instruments considered. Most studies (n=6) had high risk of bias. Overall the quality of the evidence for each tool was limited. Validation of these instruments, or others that comprehensively assess participation, is needed. Future studies should follow recommended methodological standards. Seven instruments have been used to assess participation in young people with autism. One instrument, with excellent measurement properties in one study, does not comprehensively assess participation. Studies of three instruments that incorporate a more comprehensive assessment of participation have methodological limitations. Overall, limited evidence exists regarding measurement properties of participation assessments for young people with autism.
Enhancing support for the mental wellbeing of parents of children with a disability: Developing a resource based on the perspectives of parents and professionals
Publisher: Informa UK Limited
Date: 06-02-2017
Reply to Snow et al. regarding their comment ‘A call to solve the puzzle together by building an evidence base for perioperative management of children with Autism Spectrum Disorder (ASD
Publisher:
Wiley
Date:
02-07-2016
DOI:
10.1111/PAN.12940
Publisher: Wiley
Date: 02-07-2016
DOI: 10.1111/PAN.12940
Explaining culturally and linguistically diverse (CALD) parents’ access of healthcare services for developmental surveillance and anticipatory guidance: qualitative findings from the ‘Watch Me Grow’ study
Publisher: Springer Science and Business Media LLC
Date: 22-03-2017
A prospective, longitudinal, case–control study to evaluate the neurodevelopment of children from birth to adolescence exposed to COVID-19 in utero
Publisher: Springer Science and Business Media LLC
Date: 30-01-2023
DOI: 10.1186/S12887-023-03858-W
Abstract: The Coronavirus disease (COVID-19) pandemic has created unprecedented acute global health challenges. However, it also presents a set of unquantified and poorly understood risks in the medium to long term, specifically, risks to children whose mothers were infected with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) during pregnancy. Infections during pregnancy can increase the risk of atypical neurodevelopment in the offspring, but the long-term neurodevelopmental impact of in utero COVID-19 exposure is unknown. Prospective, longitudinal studies are needed to evaluate children exposed in utero to SARS-CoV2 to define this risk. We have designed a prospective, case-controlled study to investigate the long-term impacts of SARS-CoV2 exposure on children exposed in utero. Women infected with SARS-CoV-2 during pregnancy will be recruited from Monash Health, the Royal Women’s Hospital and Western Health (Melbourne, Australia) and Londrina Municipal Maternity Hospital Lucilla Ballalai and PUCPR Medical Clinical (Londrina, Brazil). A control group in a 2:1 ratio (2 non-exposed: 1 exposed mother infant dyad) comprising women who gave birth in the same month of delivery, are of similar age but did not contract SARS-CoV-2 during their pregnancy will also be recruited. We aim to recruit 170 exposed and 340 non-exposed mother-infant dyads. Clinical and socio-demographic data will be collected directly from the mother and medical records. Biospecimens and clinical and epidemiological data will be collected from the mothers and offspring at multiple time points from birth through to 15 years of age using standardised s le collection, and neurological and behavioural measures. The mapped neurodevelopmental trajectories and comparisons between SARS-CoV-2 exposed and control children will indicate the potential for an increase in atypical neurodevelopment. This has significant implications for strategic planning in the mental health and paediatrics sectors and long-term monitoring of children globally.
Risk factors for the development of autism spectrum disorder in children with tuberous sclerosis complex: Protocol for a systematic review
Publisher: Springer Science and Business Media LLC
Date: 08-03-2017
Fabricated or induced illness in children: A guide for Australian health‐care practitioners
Publisher: Wiley
Date: 26-07-2021
DOI: 10.1111/JPC.15663
Abstract: Many paediatricians have, or will have at some time in their career, a child under their care who has, or is suspected to have, Fabricated or Induced Illness in a Child (FIIC). Often a pattern of investigation, treatment and referral develops, with things ‘just not quite adding up’ and the diagnosis of FIIC is not considered. How can Australian health‐care practitioners better recognise and respond to concerns around fabricated or induced illness? When should concerns be reported to protective services? How should we talk to families when we suspect fabrication or induction of illness in their child, and what is the role of specialised forensic paediatric services in Australia in relation to such cases? FIIC is almost certainly not as rare as commonly perceived and it can be identified early. Although challenging, FIIC can be managed effectively with a thoughtful multidisciplinary team approach. This article aims to provide paediatricians with a strategy that will hopefully serve to raise awareness, facilitate earlier intervention and simplify the approach to management, encouraging the view that taking action need be no different to addressing any other complex paediatric problem.
Understanding child disadvantage from a social determinants perspective
Publisher: BMJ
Date: 20-12-2018
Abstract: Child health and developmental inequities exist in all countries. Comprehensive and robust concepts of disadvantage are fundamental to growing an evidence base that can reveal the extent of inequities in childhood, and identify modifiable leverage points for change. We conceptualise and test a multidimensional framework of child disadvantage aligned to a social determinants and bioecological perspective. The Longitudinal Study of Australian Children is a nationally representative s le of two cohorts of Australian children, including the birth cohort of 5107 infants, which commenced in May 2004. The analysis focused on disadvantage indicators collected at age 4–5 years. Confirmatory factor analysis was used to test a theoretically informed model of disadvantage. Concurrent validity was examined through associations with academic performance at 8–9 years. The model comprising four latent factors of sociodemographic (10 indicators), geographical environments (three indicators), health conditions (three indicators) and risk factors (14 indicators) was found to provide a better fit for the data than alternative models. Each factor was associated with academic performance, providing evidence of concurrent validity. The study provides a theoretically informed and empirically tested framework for operationalising relative child disadvantage. Understanding and addressing inequities will be facilitated by capturing the complexity of children’s experiences of disadvantage across the multiple environments in which their development unfolds.
Who is our cohort: Recruitment, representativeness, baseline risk and retention in the Watch Me Grow study?
Publisher: Springer Science and Business Media LLC
Date: 24-03-2016
Adaptive innovations to provide services to children with developmental disabilities during the COVID ‐19 pandemic
Publisher: Wiley
Date: 06-11-2020
DOI: 10.1111/JPC.15224
Supporting the mental health of mothers of children with a disability: Health professional perceptions of need, role, and challenges
Publisher: Wiley
Date: 09-08-2018
DOI: 10.1111/CCH.12589
Abstract: Mothers of children with a disability have a higher risk of mental health difficulties than mothers of typically developing children. Very little is known about how health professionals perceive their role in supporting mothers' mental health. We aimed to explore the perspectives of health professionals working with families of children with a disability about how they provide support for maternal mental health in their roles. Specifically, whether professionals consider it their role and responsibility to provide support, the types of actions that they engage in to do this, and the challenges that they experience. This qualitative semi-structured interview study included 13 health professionals (allied health professionals, general practitioners, and paediatricians) working with families of a child with a disability. Thematic analysis was conducted on transcribed interview data. Four overlapping themes were identified from the data indicating that professionals knew that mothers needed mental health support but were not always clear about their roles and responsibilities to support maternal mental health. Professionals also found it difficult to address maternal mental health difficulties, were not always aware of the best strategies to support maternal mental health, and faced difficulties that could be overcome with training and system improvements. Although all health professionals were aware of the frequent occurrence of maternal mental health difficulties and the importance of addressing them, several challenges were identified to managing them successfully. Providing health professionals with training in discussing mental health and clearer referral pathways would contribute to mothers being better supported, in addition to policy change that allows parental support in child health services.
Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life?
Publisher: Wiley
Date: 26-07-2017
DOI: 10.1111/CCH.12501
Abstract: Although it is estimated that half of all children with cerebral palsy also have comorbid intellectual disability, the domains of quality of life (QOL) important for these children are not well understood. The aim of this study was to identify important domains of QOL for these children and adolescents. Due to the children's communication impairments, qualitative semi-structured interviews were conducted with 18 parents. The children (9 males) had a median age of 12 (range 7 to 17) years at interview and nearly two thirds were classified as Gross Motor Function Classification System IV or V. A grounded theory approach was used to identify domains of QOL. The 11 domains identified as important to QOL were physical health, body comfort, behaviour and emotion, communication, predictability and routine, movement and physical activity, nature and outdoors, variety of activity, independence and autonomy, social connectedness, and access to services. The domains of QOL that emerged from this study will be useful for professionals who support children with cerebral palsy and their families. They will also be important for developing a QOL instrument essential for informing the development of interventions and their monitoring and evaluation.
Brief report: Sexual attraction and relationships in adolescents with autism
Publisher: Springer Science and Business Media LLC
Date: 24-03-2017
DOI: 10.1007/S10803-017-3092-6
Abstract: Past research suggests more variation in sexual attraction in Autism Spectrum Disorder (ASD) using clinical s les. This study utilised a population representative group of 14/15 year olds from the Longitudinal Study of Australian Children. Ninety-four adolescents (73 males, 21 females) with ASD and 3454 (1685 males, 1675 females) without self-reported on sexual attraction and past sexual relationships. Females with ASD reported lower rates of heterosexual preference (adjusted odds ratio: 0.14, p < .001), higher rates of bisexuality (adjusted odds ratio: 6.05, p < .001) and uncertainty in attraction (adjusted odds ratio: 10.44, p < .001) compared with non-ASD females. ASD males reported fewer prior boyfriends/girlfriends. Findings confirm female adolescents with ASD have differences in sexual attraction compared with non-ASD females.
Clinical outcomes and associated predictors of early intervention in autism spectrum disorder: a study protocol
Publisher: BMJ
Date: 08-2021
DOI: 10.1136/BMJOPEN-2020-047290
Abstract: Research highlights the importance of early intervention for children with autism spectrum disorder with better outcomes associated with earlier access to early intensive intervention (EII) programmes. However, there is significant variability in response to EII despite children receiving the same programmes. A prospective, multisite cohort study using a pre–post design assesses the predictors of early intervention outcomes for children who receive EII through six early intervention services (Autism Specific Early Learning and Care Centres, ASELCCs) across Australia. Child and family characteristics at entry to and exit from ASELCCs are ascertained using measures of autism symptoms (Autism Diagnostic Observation Schedule-2 Social Communication Questionnaire) cognitive, language and developmental skills (Mullen Scale of Early Learning) adaptive function (Vineland Adaptive Behaviour Scale—second Edition) behaviours (Child Behaviour Checklist—1.5 to 5 years Restricted Repetitive Behaviour Scale) parental stress (Parent Stress Index-4 Short Form) quality of life (Quality of Life in Autism Scale) and a semistructured family history questionnaire for sociodemographic, family and psychosocial characteristics. Characteristics at entry are used as predictors of outcome at exit following EII approximately 12 months later. The change in score from baseline to exit will be the primary outcome of interest. The mediating role of family and psychosocial factors will also be considered. University of New South Wales Human Research Ethics Committee (HC14267). Findings will be published in peer-reviewed journals and presented at conferences. A report summarising data and the interpretation of data will be published.
Current status, opportunities, challenges and the paediatrician's role as the National Disability Insurance Scheme rolls out across Australia
Publisher: Wiley
Date: 09-08-2018
DOI: 10.1111/JPC.13641
Protective factors for social-emotional well-being of refugee children in the first three years of settlement in Australia
Publisher: BMJ
Date: 11-07-2018
DOI: 10.1136/ARCHDISCHILD-2016-312495
Abstract: This longitudinal study investigated protective factors for social-emotional well-being in refugee children in Australia. Newly arrived refugee children aged 4–15 years were recruited between 2009 and 2013 and assessments were conducted at two points, at years 2 and 3 postarrival. Social-emotional well-being was assessed using the Strengths and Difficulties Questionnaire (SDQ). Protective factors were assessed by structured interview and the Social Readjustment Rating Scale (SRRS) scores reflect fewer stressful life events in the previous year. Forty-three eligible refugee children were recruited. The SDQ was completed by parents in 90% and protective factor data in 80% at years 2 and 3 of follow-up. Protective factors for normal SDQ scores were: originating from Africa (p=0.01), father present on arrival (p=0.019) and family SRRS scores at year 2 (p=0.045). The median number of protective factors was 4 (range 1–8). Better SDQ scores were associated with ≥4 protective factors (p .006). Furthermore, more protective factors increased the child’s likelihood of a stable or improved SDQ score over time (p .04). Modifiable protective factors likely to promote social-emotional well-being include stability in the child’s school and residence, parental employment, financial and marital stability, proximity to one’s own ethnic community and external community support. Cumulative protective factors, some of which are potentially modifiable, can predict social-emotional well-being in newly arrived refugee children. Children with four or more protective factors are at low risk of poor social-emotional well-being.
Simulation-Based Education for Staff Managing Aggression and Externalizing Behaviors in Children With Autism Spectrum Disorder in the Hospital Setting: Pilot and Feasibility Study Protocol for a Cluster Randomized Controlled Trial (Preprint)
Publisher: JMIR Publications Inc.
Date: 03-02-2020
Abstract: hildren with autism spectrum disorder (ASD) frequently demonstrate aggression and externalizing behaviors in the acute care hospital environment. Pediatric acute care nursing staff are often not trained in managing aggression and, in particular, lack confidence in preventing and managing externalizing behaviors in children with ASD. High-fidelity simulation exercises will be used in this study to provide deliberate practice for acute care pediatric nursing staff in the management of aggressive and externalizing behaviors. he purpose of this study is to conduct a pilot and feasibility cluster randomized controlled trial (RCT) to evaluate the effectiveness of simulation-based education for staff in managing aggression and externalizing behaviors of children with ASD in the hospital setting. his study has a mixed design, with between-group and within-participant comparisons to explore the acceptability and feasibility of delivering a large-scale cluster RCT. The trial process, including recruitment, completion rates, contamination, and completion of outcome measures, will be assessed and reported as percentages. This study will assess the acceptability of the simulation-based training format for two scenarios involving an adolescent with autism, with or without intellectual disability, who displays aggressive and externalizing behaviors and the resulting change in confidence in managing clinical aggression. Two pediatric wards of similar size and patient complexity will be selected to participate in the study they will be randomized to receive either simulation-based education plus web-based educational materials or the web-based educational materials only. Change in confidence will be assessed using pre- and posttraining surveys for bedside nursing staff exposed to the training and the control group who will receive the web-based training materials. Knowledge retention 3 months posttraining, as well as continued confidence and exposure to clinical aggression, will be assessed via surveys. Changes in confidence and competence will be compared statistically with the chi-square test using before-and-after data to compare the proportion of those who have high confidence between the two arms at baseline and at follow-up. The simulation-based education will be recorded with trained assessors reviewing participants’ abilities to de-escalate aggressive behaviors using a validated tool. This data will be analyzed using mean values and SDs to understand the variation in performance of in iduals who undertake the training. Data from each participating ward will be collected during each shift for the duration of the study to assess the number of aggressive incidents and successful de-escalation for patients with ASD. Total change in Code Grey activations will also be assessed, with both datasets analyzed using descriptive statistics. his study gained ethical approval from The Royal Children's Hospital Melbourne Human Research Ethics Committee (HREC) on November 1, 2019 (HREC reference number: 56684). Data collection was completed in February 2020. Data analysis is due to commence with results anticipated by August 2020. e hypothesize that this study is feasible to be conducted as a cluster RCT and that simulation-based training will be acceptable for acute care pediatric nurses. We anticipate that the intervention ward will have increased confidence in managing clinical aggression in children with ASD immediately and up to 3 months posttraining. ustralian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12620000139976 www.ANZCTR.org.au/ACTRN12620000139976.aspx ERR1-10.2196/18105
Addressing Child Mental Health Inequities Through Parental Mental Health and Preschool Attendance
Publisher: American Academy of Pediatrics (AAP)
Date: 03-04-2023
Abstract: Prevention is key to reducing socioeconomic inequities in children’s mental health problems, especially given limited availability and accessibility of services. We investigated the potential to reduce inequities for disadvantaged children by improving parental mental health and preschool attendance in early childhood. Data from the nationally representative birth cohort, Longitudinal Study of Australian Children (N = 5107, commenced in 2004), were used to examine the impact of socioeconomic disadvantage (0–1 year) on children’s mental health problems (10–11 years). Using an interventional effects approach, we estimated the extent to which inequities could be reduced by improving disadvantaged children’s parental mental health (4–5 years) and their preschool attendance (4–5 years). Disadvantaged children had a higher prevalence of elevated mental health symptoms (32.8%) compared with their nondisadvantaged peers (18.7%): confounder-adjusted difference in prevalence is 11.6% (95% confidence interval: 7.7% to 15.4%). Improving disadvantaged children’s parental mental health and their preschool attendance to the level of their nondisadvantaged peers could reduce 6.5% and 0.3% of socioeconomic differences in children’s mental health problems, respectively (equivalent to 0.8% and 0.04% absolute reductions). If these interventions were delivered in combination, a 10.8% (95% confidence interval: 6.9% to 14.7%) higher prevalence of elevated symptoms would remain for disadvantaged children. Targeted policy interventions that improve parental mental health and preschool attendance for disadvantaged children are potential opportunities to reduce socioeconomic inequities in children’s mental health problems. Such interventions should be considered within a broader, sustained, and multipronged approach that includes addressing socioeconomic disadvantage itself.
Simulation-Based Education for Staff Managing Aggression and Externalizing Behaviors in Children With Autism Spectrum Disorder in the Hospital Setting: Pilot and Feasibility Study Protocol for a Cluster Randomized Controlled Trial
Publisher: JMIR Publications Inc.
Date: 04-06-2020
DOI: 10.2196/18105
Abstract: Children with autism spectrum disorder (ASD) frequently demonstrate aggression and externalizing behaviors in the acute care hospital environment. Pediatric acute care nursing staff are often not trained in managing aggression and, in particular, lack confidence in preventing and managing externalizing behaviors in children with ASD. High-fidelity simulation exercises will be used in this study to provide deliberate practice for acute care pediatric nursing staff in the management of aggressive and externalizing behaviors. The purpose of this study is to conduct a pilot and feasibility cluster randomized controlled trial (RCT) to evaluate the effectiveness of simulation-based education for staff in managing aggression and externalizing behaviors of children with ASD in the hospital setting. This study has a mixed design, with between-group and within-participant comparisons to explore the acceptability and feasibility of delivering a large-scale cluster RCT. The trial process, including recruitment, completion rates, contamination, and completion of outcome measures, will be assessed and reported as percentages. This study will assess the acceptability of the simulation-based training format for two scenarios involving an adolescent with autism, with or without intellectual disability, who displays aggressive and externalizing behaviors and the resulting change in confidence in managing clinical aggression. Two pediatric wards of similar size and patient complexity will be selected to participate in the study they will be randomized to receive either simulation-based education plus web-based educational materials or the web-based educational materials only. Change in confidence will be assessed using pre- and posttraining surveys for bedside nursing staff exposed to the training and the control group who will receive the web-based training materials. Knowledge retention 3 months posttraining, as well as continued confidence and exposure to clinical aggression, will be assessed via surveys. Changes in confidence and competence will be compared statistically with the chi-square test using before-and-after data to compare the proportion of those who have high confidence between the two arms at baseline and at follow-up. The simulation-based education will be recorded with trained assessors reviewing participants’ abilities to de-escalate aggressive behaviors using a validated tool. This data will be analyzed using mean values and SDs to understand the variation in performance of in iduals who undertake the training. Data from each participating ward will be collected during each shift for the duration of the study to assess the number of aggressive incidents and successful de-escalation for patients with ASD. Total change in Code Grey activations will also be assessed, with both datasets analyzed using descriptive statistics. This study gained ethical approval from The Royal Children's Hospital Melbourne Human Research Ethics Committee (HREC) on November 1, 2019 (HREC reference number: 56684). Data collection was completed in February 2020. Data analysis is due to commence with results anticipated by August 2020. We hypothesize that this study is feasible to be conducted as a cluster RCT and that simulation-based training will be acceptable for acute care pediatric nurses. We anticipate that the intervention ward will have increased confidence in managing clinical aggression in children with ASD immediately and up to 3 months posttraining. Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12620000139976 www.ANZCTR.org.au/ACTRN12620000139976.aspx DERR1-10.2196/18105
Gender variance in children and adolescents with autism spectrum disorder from the National Database for Autism Research
Publisher: Informa UK Limited
Date: 19-10-2016
Autism spectrum disorder: Presentation and prevalence in a nationally representative Australian sample
Publisher: SAGE Publications
Date: 17-08-2015
Abstract: The aim of this study was to identify the prevalence of parent-reported autism spectrum disorder diagnosis in Australia, and examine the developmental profile of children with autism spectrum disorder compared to their peers. Secondary analyses were undertaken on data from the Longitudinal Study of Australian Children. Children were recruited at kindergarten (K cohort) and birth (B cohort), and subsequently completed two-yearly ‘waves’ of assessments. Autism spectrum disorder diagnostic status was ascertained at Wave 4 along with age of diagnosis by parent report. Standardised tools were used to assess children’s quality of life, behaviour, receptive vocabulary and non-verbal intelligence. Prevalence of autism spectrum disorder was 2.5% (95% confidence interval = [2.0, 3.0]) in the B cohort compared to 1.5% (95% confidence interval = [1.2, 2.0]) in the K cohort. In both cohorts, children with autism spectrum disorder had poorer mean quality of life, emotional-behavioural functioning and receptive vocabulary compared with non-autism spectrum disorder peers, and a higher proportion of children with autism spectrum disorder had problems in these areas. However, between 6% and 9% of children with moderate to severe autism spectrum disorder and 12–20% with mild autism spectrum disorder were not reported to have problems with social interaction. The prevalence of a parent-reported diagnosis of autism spectrum disorder before age 7 in Australia was higher in the B cohort. Data from future Longitudinal Study of Australian Children waves will clarify whether autism spectrum disorder has been diagnosed earlier in the B cohort or if there is a continued increase in prevalence. Future waves will also provide crucial information about the types and severity of problems experienced during the primary and secondary school years which will assist service planning.
Maternal help‐seeking for child developmental concerns: Associations with socio‐demographic factors
Publisher: Wiley
Date: 29-06-2017
DOI: 10.1111/JPC.13607
Abstract: To examine socio-demographic factors associated with maternal help-seeking for child developmental concerns in a longitudinal birth cohort study. An understanding of these factors is critical to improving uptake of services to maximise early identification and intervention for developmental concerns. A birth cohort was recruited from the post-natal wards of two teaching hospitals and through community nurses in South Western Sydney, Australia, between November 2011 and April 2013. Of the 4047 mothers approached, 2025 consented to participate (response rate = 50%). Socio-demographic and service use information was collected after the child's birth and when the child was 18 months of age. Sources of help were ided into three categories (formal health services, other formal services and informal supports) and compound variables were created by summing the number of different sources identified by mothers. Significantly more sources of help were intended to be used and/or actually accessed by mothers born in Australia, whose primary language was English, with higher levels of education and annual household income, and among mothers of first-born children. Developmental concerns are known to increase with increased psychosocial adversity. Our findings of reduced intent to access and use of services by socio-economically disadvantaged families and those from culturally and linguistically erse backgrounds suggests that an inverse care effect is in operation whereby those children with the greatest health needs may have the least access to services. Possible explanations for this, and recommendations for improving service accessibility for these populations through targeted and culturally appropriate services, are discussed.
Associations Between Child Sleep Problem Severity and Maternal Well-Being in Children with Autism Spectrum Disorder
Publisher: Springer Science and Business Media LLC
Date: 08-10-2021
Overlap of autism and conditions associated with atypical sex hormone levels or response: A systematic review and meta-analysis
Publisher: Elsevier BV
Date: 02-2021
The Australian evidence-based clinical practice guideline for attention deficit hyperactivity disorder
Publisher: SAGE Publications
Date: 30-05-2023
DOI: 10.1177/00048674231166329
Abstract: The objective of this article was to provide an overview of the development and recommendations from the Australian evidence-based clinical practice guideline for attention deficit hyperactivity disorder (ADHD). The guideline aims to promote accurate and timely identification and diagnosis, and optimal and consistent treatment of ADHD. Development integrated the best available evidence with multidisciplinary clinical expertise and the preferences of those with lived experience, underpinned by the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) framework. The 23 guideline development group members included psychiatrists, paediatricians, general practitioners, psychologists, speech pathologists, occupational therapists, educators, Indigenous psychologists, and people with a lived experience with two independent chairs and a methodologist. Where appropriate, evidence reviews from the National Institute for Health and Care Excellence (NICE) 2018 ‘Attention Deficit Hyperactivity Disorder: Diagnosis and Management’ guideline were updated. Fifty prioritised clinical questions were addressed in 14 systematic reviews (new and updated from NICE 2018) and 28 narrative reviews. The 113 clinical recommendations apply to young children (5 years and under), children, adolescents and adults. They provide guidance for clinicians on identification, screening, diagnosis, multimodal treatment and support, including pharmacological and non-pharmacological interventions. The guideline and supporting information are available online: adhdguideline.aadpa.com.au/ The guideline was approved by the National Health and Medical Research Council (NHMRC) of Australia and relevant medical and allied health professional associations. It is anticipated that successful implementation and uptake of the guideline by organisations, health care providers and other professionals will increase delivery of evidence-based treatment and improve health outcomes for the more than 800,000 Australians with ADHD.
Identifying and supporting autistic preschoolers and their families
Publisher: The Royal Australian College of General Practitioners
Date: 03-2021
Factors associated with referral for polysomnography in children with Down syndrome
Publisher: Elsevier BV
Date: 06-2021
Is language ability associated with behaviors of concern in autism? A systematic review
Publisher: Wiley
Date: 22-11-2023
DOI: 10.1002/AUR.2855
Abstract: This review systematically synthesized evidence on the association between structural language ability and behaviors of concern (BoC) in autism. Four databases were searched for studies that included autistic participants, measures of structural language (content and/or form of language) and BoC, and an analysis of their association. BoCs included self‐injurious behavior (SIB), aggression, tantrums, and externalizing behavior. Methodological quality of studies were assessed using the Newcastle Ottawa Scale. Forty‐five publications ( n = 11,961) were included. Forty studies were cross‐sectional and five were prospective cohort studies. Over 70% of the studies investigating expressive language and SIB ( n = 10), aggression ( n = 5), tantrums ( n = 3), and externalizing behavior ( n = 17) reported an inverse association, where lower expressive language ability was associated with increased BoC. Eleven out of sixteen studies of combined expressive and receptive language reported an inverse relationship with SIB or aggression. All outcomes were rated as moderate to very low certainty of evidence. This review highlights evidence showing an inverse association between expressive or combined language ability and SIB, and externalizing behavior in autism. However, further high‐quality studies that use standardized, consistent measures of language and behavior and investigate longitudinal associations are needed. Early detection and support for reduced structural language difficulties have substantial potential to assist in reducing BoC.
Seizures in Children With Cerebral Palsy and White Matter Injury
Publisher: American Academy of Pediatrics (AAP)
Date: 03-2017
Abstract: The goal of this study was to describe the prevalence, syndromes, and evolution of seizure disorders in children with cerebral palsy (CP) due to white matter injury (WMI). For this population-based cohort study, brain MRI scans and medical records were reviewed in children in the Victorian Cerebral Palsy Register born between 1999 and 2006 recorded as having WMI. Children were excluded if they had features of an undiagnosed syndrome, associated cortical malformation or injury, or no medical contact in the preceding year. Included were 166 children with CP and isolated WMI due to presumed vascular insufficiency or hemorrhage 87 were born preterm. Seizure and CP details were obtained from medical records and interviews, and EEG recordings were reviewed. Forty-one children (25%) had seizures beyond the neonatal period. Four children had West syndrome, which resolved with treatment. Thirteen children had febrile seizures that they outgrew. Thirty children had focal epilepsy with seizure manifestations and EEG discharges typical of early-onset childhood occipital epilepsy or childhood epilepsy with centrotemporal spikes 23 have outgrown these seizures. Two children had idiopathic generalized epilepsy it was ongoing in 1 child. Fourteen children had evolution from 1 epileptic syndrome to another. At last follow-up (median age, 12.7 years minimum age, 9.7 years), 80% had not had a seizure for & years. The electroclinical features of seizure disorders associated with CP and WMI are those of the age-limited, epileptic syndromes of childhood, with favorable outcome in the majority. The findings have important implications for counseling and drug treatment.
Paediatric emergency department presentations due to feeding tube complications in children with cerebral palsy
Publisher: Wiley
Date: 30-01-2019
DOI: 10.1111/JPC.14386
Abstract: To describe the characteristics of emergency department (ED) presentations due to complications from gastrostomy or gastrojejunal feeding tubes among children with cerebral palsy (CP), the complexity of complications and the management approaches taken. The Victorian CP Register was linked to the ED databases of Victoria's two tertiary paediatric hospitals, and data on presentations due to feeding tube complications were identified based on discharge diagnosis codes. Additional data on presentations were extracted from medical records. Over 5 years, there were 234 ED presentations due to feeding tube-related complaints among a CP cohort (n = 2183). ED notes were located for 183 of the 234 presentations. The majority of presentations (90%) involved children with severe gross motor impairment. A total of 46% of presentations (n = 84) was triaged as lower urgency, and 68% (n = 124) took place between 08:00 am and 06:00 pm. The most common presenting complaint was tube dislodgement (n = 105 70%). No investigations were recorded in the majority of cases, and in almost 90% of cases, the feeding tube was successfully replaced in the ED, usually by an ED physician (n = 74) and less frequently by a surgeon (n = 9), gastroenterologist (n = 2) or nurse (n = 8) 9% (n = 17) resulted in a hospital admission. Most ED presentations due to feeding tube complaints in children with CP are in children with severe gross motor impairment but are able to be managed in the ED. As such, it is likely that care givers and other health professionals could manage some of the complications experienced in primary health-care settings closer to home.
A systematic review of the biological, social, and environmental determinants of intellectual disability in children and adolescents
Publisher: Frontiers Media SA
Date: 25-08-2022
DOI: 10.3389/FPSYT.2022.926681
Abstract: This systematic review aimed to identify the most important social, environmental, biological, and/or genetic risk factors for intellectual disability (ID). Eligible were published prospective or retrospective comparative studies investigating risk factors for ID in children 4–18 years. Exclusions were single group studies with no comparator without ID and a s le size & . Electronic databases (Medline, Cochrane Library, EMBASE, PsycInfo, C bell Collaboration, and CINAHL) were searched for eligible publications from 1980 to 2020. Joanna Briggs Institute critical appraisal instruments, appropriate for study type, were used to assess study quality and risk of bias. Descriptive characteristics and in idual study results were presented followed by the synthesis for in idual risk factors, also assessed using GRADE. Fifty-eight in idual eligible studies were grouped into six exposure topics: sociodemographic antenatal and perinatal maternal physical health maternal mental health environmental genetic or biological studies. There were few eligible genetic studies. For half the topics, the certainty of evidence (GRADE) was moderate or high. Multiple studies have examined in idual potential determinants of ID, but few have investigated holistically to identify those populations most at risk. Our review would indicate that there are vulnerable groups where risk factors we identified, such as low socioeconomic status, minority ethnicity, teenage motherhood, maternal mental illness, and alcohol abuse, may cluster, highlighting a target for preventive strategies. At-risk populations need to be identified and monitored so that interventions can be implemented when appropriate, at preconception, during pregnancy, or after birth. This could reduce the likelihood of ID and provide optimal opportunities for vulnerable infants. [ www.crd.york.ac.uk rospero/display_record.php?RecordID=120032 ], identifier [CRD42019120032].
No increased risk of mothers of children with autism having androgen-related cancers in an Australian population based sample
Publisher: Elsevier BV
Date: 10-2021
A systematic review of brain MRI findings in monogenic disorders strongly associated with autism spectrum disorder
Publisher: Wiley
Date: 23-08-2021
DOI: 10.1111/JCPP.13510
Abstract: Research on monogenic forms of autism spectrum disorder (autism) can inform our understanding of genetic contributions to the autism phenotype yet, there is much to be learned about the pathways from gene to brain structure to behavior. This systematic review summarizes and evaluates research on brain magnetic resonance imaging (MRI) findings in monogenic conditions that have strong association with autism. This will improve understanding of the impact of genetic variability on brain structure and related behavioral traits in autism. The search strategy for this systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Risk of bias (ROB) assessment was completed on included studies using the Newcastle‐Ottawa Scales. Of 4,287 studies screened, 69 were included pertaining to 13 of the top 20 genes with the strongest association with autism. The greatest number of studies related to in iduals with PTEN variants and autism. Brain MRI abnormalities were reported for 12 of the 13 genes studied, and in 51.7% of participants across all 13 genes, including 100% of participants with ARID1B variants. Specific MRI findings were highly variable, with no clear patterns emerging within or between the 13 genes, although white matter abnormalities were the most common. Few studies reported specific details about methods for acquisition and processing of brain MRI, and descriptors for brain abnormalities were variable. ROB assessment indicated high ROB for all studies, largely due to small s le sizes and lack of comparison groups. Brain abnormalities are common in this population of in iduals, in particular, children however, a range of different brain abnormalities were reported within and between genes. Directions for future neuroimaging research in monogenic autism are suggested.
Coaching While Waiting for Autism Spectrum Disorder Assessment: Protocol of a Pilot Feasibility Study for a Randomized Controlled Trial on Occupational Performance Coaching and Service Navigation Support
Publisher: JMIR Publications Inc.
Date: 07-01-2021
DOI: 10.2196/20011
Abstract: In Australia, the average time between a first concern of autism spectrum disorder (ASD) and diagnosis is over 2 years. After referral for assessment, families often wait 6-12 months before their appointment. This can be a time of uncertainty and stress for families. For some families, other forms of assistance are not accessible and thus timely intervention opportunities are missed. There is little evidence about how to provide the best support for children or caregivers while on assessment waiting lists. The aim of this study is to determine whether use of a coaching intervention called Occupational Performance Coaching (OPC) combined with service navigation support is feasible for families waiting for ASD assessment, as a crucial first step in planning a randomized controlled trial. A pilot and feasibility study will be conducted using recommended constructs and associated measures, which will be reported using CONSORT (Consolidated Standards or Reporting Trials) guidance. Participants will be child and caregiver dyads or triads, recruited within 4 months of their child (aged 1-7 years) being referred to one of two services for an ASD assessment in Victoria, Australia. A blinded randomization procedure will be used to allocate participants to one of three trial arms: (1) coaching and support intervention delivered face to face, (2) coaching and support intervention via videoconference, and (3) usual care. Descriptive statistics will be used to describe the s le characteristics of parents and children, inclusive of service access at baseline and follow up. Recruitment rates will be reported, and retention rates will be evaluated against a predicted rate of 70%-80% in each intervention arm. Goal attainment, using the Canadian Occupational Performance Measure, will indicate preliminary evidence for efficacy within the intervention arms, with an increase of 2 or more points on a 10-point performance and satisfaction scale considered clinically significant. The study was approved by The Royal Children’s Hospital Research Ethics and Governance Department in September 2018. As of October 2020, 16 families have been recruited to the study. Data analysis is ongoing and results are expected to be published in 2021. Study findings will support planning for a future randomized controlled trial to assess the efficacy of OPC and service navigation support for caregivers of children awaiting ASD assessment. Australian New Zealand Clinical Trials Registry ACTRN12620000164998 www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=378793& isReview=true DERR1-10.2196/20011
Consumer and health professional perceptions of Watch Me Grow – Electronic (WMG-E) platform for developmental surveillance in early childhood: A qualitative study
Publisher: The Royal Australian College of General Practitioners
Date: 06-2022
Coaching While Waiting for Autism Spectrum Disorder Assessment: A Pilot Feasibility Study for a Randomized Controlled Trial on Occupational Performance Coaching and Service Navigation
Publisher: Springer Science and Business Media LLC
Date: 30-04-2023
DOI: 10.1007/S10803-022-05558-3
Abstract: To determine whether short-phase Occupational Performance Coaching combined with service navigation support is feasible for families waiting for autism assessment. A pilot feasibility study was conducted using a blinded randomization procedure that allocated participants to one of three trial arms: (1) face-to-face coaching, (2) videoconference coaching, and (3) usual care. Outcomes included a retention aim of 70–80%, goal attainment and secondary standardised measures of adaptive behaviour, social skills, parenting stress, service access and family quality of life. Caregivers and children (n = 16, child mean age of 3 years 7 months) were recruited following referral for an autism assessment. Retention was 75%, with change scores in performance and satisfaction of selected goals higher in the intervention groups than the usual care group. Findings support progression to a future randomized controlled trial assessing intervention efficacy.
Conceptualising paediatric advance care planning: a qualitative phenomenological study of paediatricians caring for children with life-limiting conditions in Australia
Publisher: BMJ
Date: 05-2022
DOI: 10.1136/BMJOPEN-2021-060077
Abstract: Advance care planning (ACP) helps families and paediatricians prepare and plan for end-of-life decision-making. However, there remains inconsistency in its practice with the limited literature describing what this preparation involves, and whether paediatricians recognise a difference between the process of ACP and its outcomes, such as resuscitation plans. This study aims to understand how paediatricians conceptualise ACP when caring for children with life-limiting conditions (LLC) who are unable to participate in decision-making for his/herself. In idual, semistructured, vignette-based qualitative interviews. Acute inpatient and long-term outpatient paediatric care in three secondary and two tertiary centres in Victoria, Australia. 25 purposively s led paediatricians who treat children with LLC, outside the neonatal period. Paediatricians were excluded if they worked within specialist palliative care teams or assisted in this study’s design. Four key themes were identified when approaching end-of-life decision-making discussions: (1) there is a process over time, (2) there are three elements, (3) the role of exploring parental values and (4) the emotional impact. The three elements of this process are: (1) communicating the child’s risk of death, (2) moving from theoretical concepts to practice and (3) documenting decisions about resuscitation or intensive technologies. However, not all paediatricians recognised all elements as ACP, nor are all elements consistently or intentionally used. Some paediatricians considered ACP to be only documentation of decisions in advance. There is a preparatory process of discussions for end-of-life decision-making, with elements in this preparation practised within therapeutic relationships. Complexity in what constitutes ACP needs to be captured in guidance and training to include intentional exploration of parental values, and recognition and management of the emotional impact of ACP could increase its consistency and value.
Brief Report: An Exploratory Study of the Diagnostic Reliability for Autism Spectrum Disorder
Publisher: Springer Science and Business Media LLC
Date: 23-02-2017
DOI: 10.1007/S10803-017-3054-Z
Abstract: Previous research shows inconsistency in clinician-assigned diagnoses of Autism Spectrum Disorder (ASD). We conducted an exploratory study that examined the concordance of diagnoses between a multidisciplinary assessment team and a range of independent clinicians throughout Australia. Nine video-taped Autism Diagnostic Observation Schedule (ADOS) assessments were collected from two Australian sites. Twenty-seven Australian health professionals each observed two video-recordings and rated the degree to which the in idual met the DSM-5 criteria for ASD. There was 100% agreement on the diagnostic classification for only 3 of the 9 video clips (33%), with the remaining 6 clips (66%) reaching poor reliability. In addition, only 24% of the participating clinicians achieved 'good' or 'excellent' levels of agreement (Cohen's kappa > 0.6) with the original ASD assessment. These findings have implications for clinical guidelines for ASD assessments.
Sleeping Sound Autism Spectrum Disorder (ASD): a randomised controlled trial of a brief behavioural sleep intervention in primary school-aged autistic children
Publisher: Wiley
Date: 13-03-2022
DOI: 10.1111/JCPP.13590
Abstract: Behavioural sleep problems are common in children with autism spectrum disorder (ASD) however, evidence for the efficacy of behavioural sleep interventions is limited. This study examined the efficacy of a brief behavioural sleep intervention in autistic children. It was hypothesised that the intervention would reduce overall child sleep problems (primary outcome), in addition to improvements in children’s social, emotional, cognitive, academic functioning, and quality of life, and parent/caregivers’ stress, quality of life, and mental health (secondary outcomes). A randomised controlled trial was conducted with participants randomised via a computer‐generated sequence to the sleeping sound intervention ( n = 123) or treatment as usual ( n = 122) group. Participants comprised 245 children with an ASD diagnosis. Inclusion criteria were as follows: confirmation of DSM IV or DSM‐5 diagnosis of ASD, participants aged between 5 and 13 years and parent/caregiver report of moderate–severe sleep problems. Exclusion criteria were as follows: parent/caregiver intellectual disability or lacking sufficient English to complete questionnaires and child participant with co‐occurring medical conditions known to impact sleep. The intervention group received the sleeping sound intervention (2 × 50‐min face‐to‐face sessions plus follow‐up phone call) by a trained clinician. Change in children’s sleep problems was measured by the Children’s Sleep Habits Questionnaire (CSHQ) at 3 months post randomisation. Parents/caregivers of children in the intervention group reported a reduction in child sleep problems at 3 months post randomisation (effect size: E.S −0.7). There were also small effects in a number of child (internalising symptoms, emotional behavioural disturbance and quality of life) and parent/caregiver (mental health, parenting stress and quality of life) outcomes however, these did not remain significant when controlling for multiple comparisons. The sleeping sound ASD intervention is an efficacious and practical way to reduce sleep problems for autistic children. This brief behavioural intervention has the potential to be embedded easily into the Australian healthcare system.
Diagnostic evaluation for autism spectrum disorder: A survey of health professionals in Australia
Publisher: BMJ
Date: 09-2016
Prevalence and Age of Onset of Regression in Children with Autism Spectrum Disorder: A Systematic Review and Meta‐analytical Update
Publisher: Wiley
Date: 24-01-2021
DOI: 10.1002/AUR.2463
Parent-reported patterns of loss and gain in communication in 1- to 2-year-old children are not unique to autism spectrum disorder
Publisher: SAGE Publications
Date: 08-07-2016
Abstract: We compared loss and gain in communication from 1 to 2 years in children later diagnosed with autism spectrum disorder (n = 41), language impairment (n = 110) and in children with typical language development at 7 years (n = 831). Participants were selected from a prospective population cohort study of child language (the Early Language in Victoria Study). Parent-completed communication tools were used. As a group, children with autism spectrum disorder demonstrated slower median skill gain, with an increasing gap between trajectories compared to children with typical development and language impairment. A proportion from all groups lost skills in at least one domain (autism spectrum disorder (41%), language impairment (30%), typical development (26%)), with more children with autism spectrum disorder losing skills in more than one domain (autism spectrum disorder (47%), language impairment (15%, p = 0.0003), typical development (16%, p 0.001)). Loss was most common for all groups in the domain of ‘emotion and eye gaze’ but with a higher proportion for children with autism spectrum disorder (27% language impairment (12%, p = 0.03), typical development (14%, p = 0.03)). A higher proportion of children with autism spectrum disorder also lost skills in gesture (p = 0.01), sounds (p = 0.009) and understanding (p = 0.004) compared to children with typical development but not with language impairment. These findings add to our understanding of early communication development and highlight that loss is not unique to autism spectrum disorder.
Outcomes after scoliosis surgery for children with cerebral palsy: a systematic review
Publisher: Wiley
Date: 06-03-2017
DOI: 10.1111/DMCN.13412
Abstract: This study aims (1) to evaluate and synthesize the evidence for the postoperative outcomes after scoliosis surgery for children with cerebral palsy (CP), and (2) to identify preoperative risk factors for adverse outcomes after surgery. Medline, EMBASE, CINAHL, and PubMed were searched for relevant literature. Included studies were assessed for risk of bias using the Cochrane Effective Practice and Organisation of Care tool. Quality of evidence for overall function, quality of life (QoL), gross motor function, caregiver outcomes, deformity correction, and postoperative complications were assessed using GRADE (Grades of Recommendation, Assessment, Development and Evaluation). Fifty-one studies met inclusion criteria, including 35 case series designs. Risk of bias was high across all studies. On average good deformity correction was achieved, the trend appears positive for caregiver and QoL outcomes, but there was minimal to no change for gross motor or overall function. Inconsistent measurement limited synthesis. A mean overall complication rate of 38.1% (95% confidence interval 27.3-53.3) was found. The quality of evidence was very low across all functional outcomes. Limited high-quality evidence exists for outcomes after scoliosis surgery in children with CP, a procedure associated with a moderately high complication rate. The intervention appears indicated for deformity correction, but currently there is insufficient evidence to make recommendations for this surgery as a way to also improve functional outcomes, caregiver outcomes, and quality of life.
Gender Variance in Children and Adolescents with Neurodevelopmental and Psychiatric Conditions from Australia
Publisher: Springer Science and Business Media LLC
Date: 31-03-2021
Coaching While Waiting for Autism Spectrum Disorder Assessment: Protocol of a Pilot Feasibility Study for a Randomized Controlled Trial on Occupational Performance Coaching and Service Navigation Support (Preprint)
Publisher: JMIR Publications Inc.
Date: 09-05-2020
Abstract: n Australia, the average time between a first concern of autism spectrum disorder (ASD) and diagnosis is over 2 years. After referral for assessment, families often wait 6-12 months before their appointment. This can be a time of uncertainty and stress for families. For some families, other forms of assistance are not accessible and thus timely intervention opportunities are missed. There is little evidence about how to provide the best support for children or caregivers while on assessment waiting lists. he aim of this study is to determine whether use of a coaching intervention called Occupational Performance Coaching (OPC) combined with service navigation support is feasible for families waiting for ASD assessment, as a crucial first step in planning a randomized controlled trial. pilot and feasibility study will be conducted using recommended constructs and associated measures, which will be reported using CONSORT (Consolidated Standards or Reporting Trials) guidance. Participants will be child and caregiver dyads or triads, recruited within 4 months of their child (aged 1-7 years) being referred to one of two services for an ASD assessment in Victoria, Australia. A blinded randomization procedure will be used to allocate participants to one of three trial arms: (1) coaching and support intervention delivered face to face, (2) coaching and support intervention via videoconference, and (3) usual care. Descriptive statistics will be used to describe the s le characteristics of parents and children, inclusive of service access at baseline and follow up. Recruitment rates will be reported, and retention rates will be evaluated against a predicted rate of 70%-80% in each intervention arm. Goal attainment, using the Canadian Occupational Performance Measure, will indicate preliminary evidence for efficacy within the intervention arms, with an increase of 2 or more points on a 10-point performance and satisfaction scale considered clinically significant. he study was approved by The Royal Children’s Hospital Research Ethics and Governance Department in September 2018. As of October 2020, 16 families have been recruited to the study. Data analysis is ongoing and results are expected to be published in 2021. tudy findings will support planning for a future randomized controlled trial to assess the efficacy of OPC and service navigation support for caregivers of children awaiting ASD assessment. ustralian New Zealand Clinical Trials Registry ACTRN12620000164998 www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=378793& isReview=true ERR1-10.2196/20011
Methods for a longitudinal cohort of refugee children in a regional community in Australia
Publisher: BMJ
Date: 08-2016
Decision-making approaches for children with life-limiting conditions: results from a qualitative phenomenological study
Publisher: Springer Science and Business Media LLC
Date: 16-05-2022
DOI: 10.1186/S12910-022-00788-7
Abstract: For children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a life-limiting condition who is unable to participate in decision-making for his/herself. This qualitative phenomenological study involved 25 purposively s led paediatricians. Verbatim transcripts from in idual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician. Two key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: (1) there is a spectrum of paediatricians’ roles and responsibilities in decision-making, and (2) the specific influences on paediatricians’ choice of approach for end-of-life decisions. In relation to (1), analysis showed four distinct approaches: (i) non-directed, (ii) joint, (iii) interpretative, and (iv) directed. In relation to (2), the common factors were: (i) harm to the child, (ii) possible psychological harm to parents, (iii) parental preferences in decision-making, and (iv) resource allocation. Despite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians’ considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making. Trial registration: Not applicable.
Autism spectrum disorder: Updated prevalence and comparison of two birth cohorts in a nationally representative Australian sample
Publisher: BMJ
Date: 05-2017
Sex- and age-related differences in autistic behaviours in children with neurofibromatosis type 1
Publisher: Springer Science and Business Media LLC
Date: 20-04-2022
DOI: 10.1007/S10803-022-05571-6
Abstract: This study investigated sex and age differences in autistic behaviours in children with neurofibromatosis type 1 (NF1) who scored within the clinical range on the Social Responsiveness Scale - Second Edition (T score ≥ 60). Thirty-four males and 28 females (3-16 years) were assessed with the Autism Diagnostic Observation Schedule - Second Edition and Autism Diagnostic Interview - Revised. Across both measures, males exhibited greater social communication deficits relative to females. Age-related abatement of social communication difficulties was observed for males but not females. Conversely, no sex differences were found for restricted/repetitive behaviours, which were stable over time for both males and females. The findings are discussed within the context of broader neurodevelopmental considerations that are common in NF1.
Therapy service use in children and adolescents with cerebral palsy: An A ustralian perspective
Publisher: Wiley
Date: 26-11-2015
DOI: 10.1111/JPC.13021
Abstract: The aim of this study was to describe the patterns of therapy service use for a s le of children and adolescents with cerebral palsy over a 1 year period and to identify factors associated with frequency of therapy and parental satisfaction with therapy frequency. Parents of 83 children completed a survey on their child's use of occupational therapy, physiotherapy and speech and language pathology services over the previous year. Participants were randomly selected from a s le stratified by age and Gross Motor Function Classification System (GMFCS) level. During the year prior to survey completion, 83% of children had received occupational therapy, 88% had received physiotherapy and 60% had received speech and language pathology services. Frequency of therapy was higher for younger children (P < 0.01), those classified at GMFCS levels IV-V (P < 0.05) and those attending schools specifically for children with disabilities. Current structures for therapy service delivery for children with cerebral palsy are systems-based, and age-based funding systems and the organisation of services around the education system are preventing the delivery of needs-based therapy. Paediatricians that care for children and young people with cerebral palsy need to pay particular attention to those that may miss out on therapy due to age or school type, and support these families in accessing appropriate therapy.
Association between early androgens and autistic traits: A systematic review and meta-analysis
Publisher: Elsevier BV
Date: 07-2021
Experiences and barriers to accessing mental health support in mothers of children with a disability
Publisher: Wiley
Date: 24-05-2021
DOI: 10.1111/CCH.12884
Abstract: Despite evidence for high levels of mental health problems in mothers of children with a disability and the potential impact on caring for their child, very little is known about mothers' experience in accessing professional mental health support. This study aimed to explore mothers' views and experience on seeking help for their mental health. Semi‐structured interviews were conducted with 25 mothers of children with a disability. Thematic analysis was completed. Mothers experienced significant barriers when accesing support at the personal, professional and system level. Personal barriers included the need for competency and stigma about mental illness: professional barriers included the lack of discussions about mental health and interpersonal factors that hindered disclosure. System barriers included feeling invisible to the health services, paediatric care focusing on the child rather than the family and limitations to the type of mental health support available. Mothers perceive substantial barriers in accessing support for their mental health. It is important that strategies are designed so the importance of mentally healthy mothers is understood and to normalize a need for assistance when you are the mother of a child with additional support needs. Strategies are also needed to encourage mothers to seek help and to assist professionals having discussions about maternal wellbeing. Improvements are also required in the accessibility of service supports.
Qualitative analysis of parental observations on quality of life in Australian children with Down syndrome
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 02-2017
Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort
Publisher: MDPI AG
Date: 07-04-2021
Abstract: Health registries are critical to understanding, benchmarking and improving quality of care for specific diseases and conditions, but face hurdles including funding, bias towards clinical rather than population s les, lack of pre-morbid and outcomes data, and absent cross-registry harmonisation and coordination. Children are particularly under-represented in registry research. This paper lays out novel principles, methods and governance to integrate erse registries within or alongside a planned children’s mega-cohort to rapidly generate translatable evidence. GenV (Generation Victoria) will approach for recruitment parents of all newborns (estimated 150,000) over two years from mid-2021 in the state of Victoria (population 6.5 million), Australia. Its s le size and population denominator mean it will contain almost all children with uncommon or co-morbid conditions as they emerge over time. By design, it will include linked datasets, bios les (including from pregnancy), phenotypes and participant-reported measures, all of which will span pre-morbid to long-term outcomes. We provide a vignette of a planned new registry for high-risk pregnancies to illustrate the possibilities. To our knowledge, this is the first paper to describe such a methodology designed prospectively to enhance both the clinical relevance of a large multipurpose cohort and the value and inclusivity of registries in a population.
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