Katrina Williams | The Urals State Law Academy (original) (raw)

Papers by Katrina Williams

Research paper thumbnail of A comparison of two models of support for students with autism spectrum disorder in school and predictors of school success

Research in Autism Spectrum Disorders, 2019

Background: There is little comparative data on models of support for children with Autism spectr... more Background: There is little comparative data on models of support for children with Autism spectrum disorder (ASD) in school. The objectives of this research were (1) to compare the outcomes of two service delivery models (Autism Spectrum Australia satellite support class and Autism SA consultative model) that were designed to facilitate the support of children with ASD in mainstream schools and (2) to examine factors that were associated with successful outcomes. Method: A total of 90 students were followed 6-monthly for up to 7 rounds (3.5 years). Primary outcomes of interest included continuity of placement, school engagement and adjustment, perceived success of placement, and parent/teacher/principal satisfaction with service delivery. Results: Continuity of placement was relatively high in both models. There were no differences in child outcome across the models but the parents in the satellite model rated placement success higher, albeit in the context of high overall ratings in both groups. Parents and principals also rated satisfaction with support higher in the satellite model but transitions from the model into regular classes were low during the period of the study. Teacher rated academic skill predicted child social skills as well as engagement and adjustment, child problem behavior negatively predicted parent and teacher rating of placement success and adaptive behavior predicted teacher and principal rating of placement success. Conclusions: The present study offers insight into possible program and child related predictors of a range of outcome measures. Implications for the respective service delivery models and directions for future research are presented.

Research paper thumbnail of Perspectives on Regular and Support Class Placement and Factors that Contribute to Success of Inclusion for Children with ASD

Journal of International Special Needs Education, 2014

For young children with autism spectrum disorder (ASD) in regular schools, ASD specific service d... more For young children with autism spectrum disorder (ASD) in regular schools, ASD specific service delivery options include regular class placement with itinerant consultative support and support class placement. This study provided an examination of levels of parent, teacher and principal satisfaction with both regular class placement (n = 39) and a satellite support class option (n=35), which provides a more gradual transition into regular class. Given that regular class placement was the ultimate goal for children enrolled in the study, factors that either facilitated or acted as barriers to successful inclusion were examined for those children currently in regular classes. There were relatively high levels of parent, teacher and principal satisfaction with both satellite support class and regular class placement for children with ASD, with higher levels of parental satisfaction with satellite support placement. Across all respondents, the most frequently identified facilitating fac...

Research paper thumbnail of Agreement between concern about autism spectrum disorder at the time of referral and diagnosis, and factors associated with agreement

Journal of paediatrics and child health, Jan 4, 2017

This study examined the level of agreement between referral reason and diagnostic outcome for pre... more This study examined the level of agreement between referral reason and diagnostic outcome for pre-school aged children showing developmental delays and differences. In particular, the level of agreement when there was concern about autism spectrum disorder (ASD) was investigated. Clinical records for children (n = 677) assessed for developmental concerns at a multidisciplinary assessment clinic in Sydney, Australia, were examined. Referral reason and diagnostic outcome were compared. Referral sources and factors including age, developmental level and language functioning, were explored for potential association with the consistency between referral reason and diagnosis. Approximately 30% of children referred for developmental assessment with ASD concern were not diagnosed with ASD. Agreement between referral reason and diagnosis was similar regardless of referral source and child age. Of children where diagnostic outcome was discordant with referral reason, 24% had delayed language....

Research paper thumbnail of Incidence of autism spectrum disorders in children in two Australian states

Medical Journal of Australia, 2005

Australia 2005 www.mja.com.au Research ecently, there has been controversy about the incidence of... more Australia 2005 www.mja.com.au Research ecently, there has been controversy about the incidence of autism and whether it is increasing. Two reasons commonly suggested for a perceived increase are the lack of consistency of diagnoses and changes in diagnostic classification. 1-3 The diagnosis of autism has broadened since it was first described in 1943, 4 and there is evidence of poor agreement among clinicians about what constitutes autism for less severely affected children, 5 and whether subgroups of autism are distinct. 6 Variation in study methods has also been implicated as a cause of differences in reported prevalence. 1,7 The concept of a continuum of autism was first discussed in 1979, 8 and the terms

Research paper thumbnail of Consent and recruitment: the reporting of paediatric trials published in 2012

BMJ Paediatrics Open, 2018

ObjectivesWe evaluated 300 paediatric trials to determine: the consent and recruitment strategies... more ObjectivesWe evaluated 300 paediatric trials to determine: the consent and recruitment strategies used, who trial information was targeted to, how incentives were used and if they achieved their recruitment targets.MethodsFor this cross-sectional evaluation, we searched the Cochrane Central Register of Controlled Trials for paediatric trials published in 2012 and randomly selected 300 that reported on outcomes for participants aged ≤21 years. We collected data on consent and recruitment procedures for each trial and undertook descriptive analyses in SPSS statistics V.23.ResultsAll but one trial (99.7%) used a standard recruitment strategy. Most (92%) trials reported that consent was obtained but only 13% reported who obtained consent. Two-thirds (65%) of trials included school-aged participants, and of these 68% reported obtaining assent. Half (50%) of the trials reported who the trial information was targeted to. Most trials (75%) of school-aged participants targeted information to...

Research paper thumbnail of A descriptive analysis of non-Cochrane child-relevant systematic reviews published in 2014

BMC medical research methodology, 2018

Consumers, clinicians, policymakers and researchers require high quality evidence to guide decisi... more Consumers, clinicians, policymakers and researchers require high quality evidence to guide decision-making in child health. Though Cochrane systematic reviews (SRs) are a well-established source of evidence, little is known about the characteristics of non-Cochrane child-relevant SRs. To complement published descriptions of Cochrane SRs, we aimed to characterize the epidemiologic, methodological, and reporting qualities of non-Cochrane child-relevant SRs published in 2014. English-language child-relevant SRs of quantitative primary research published outside the Cochrane Library in 2014 were eligible for this descriptive analysis. A research librarian searched MEDLINE, CINAHL, Web of Science, and PubMed in August 2015. A single reviewer screened articles for inclusion; a second verified the excluded studies. Reviewers extracted: general characteristics of the review; included study characteristics; methodological approaches. We performed univariate analyses and presented the finding...

Research paper thumbnail of Twin-to-twin transfusion syndrome neurodevelopmental follow-up study (neurodevelopmental outcomes for children whose twin-to-twin transfusion syndrome was treated with placental laser photocoagulation)

BMC pediatrics, 2018

Twin-to-twin transfusion syndrome (TTTS) is a serious complication of 10-15% of twin or triplet p... more Twin-to-twin transfusion syndrome (TTTS) is a serious complication of 10-15% of twin or triplet pregnancies in which multiple fetuses share a single placenta. Communicating placental vessels allow one fetus (the donor) to pump blood to the other (the recipient). Mortality rates without intervention are high, approaching 100% in some series, with fetal deaths usually due to cardiac failure. Surgical correction using laser photocoagulation of communicating placental vessels was developed in the 1980s and refined in the 1990s. Since it was introduced in Victoria in 2006, laser surgery has been performed in approximately 120 pregnancies. Survival of one or more fetuses following laser surgery is currently > 90%, however the neurodevelopmental outcomes for survivors remain incompletely understood. Prior to laser therapy, at least one in five survivors of TTTS had serious adverse neurodevelopmental outcomes (usually cerebral palsy). Current estimates of neurological impairment among su...

Research paper thumbnail of Protocol for a prospective longitudinal study investigating the participation and educational trajectories of Australian students with autism

BMJ open, Jan 23, 2018

Autism is associated with high cost to individuals, families, communities and government. Underst... more Autism is associated with high cost to individuals, families, communities and government. Understanding educational and participation trajectories during the school years, and factors influencing these, is fundamental to reducing financial and personal costs. The primary aim of this study is to document the trajectories of Australian students with autism during their education. The secondary aim is to examine personal (eg, student skills) and environmental (eg, school setting) factors associated with differing trajectories and outcomes. The cross-sequential longitudinal study will recruit two cohorts of 120 parents/caregivers of children with autism. Cohort 1 aged between 4 and 5 years and cohort 2 between 9 and 10 years to start the study. Information will be gathered from parents, teachers and school principals at six annual time points (T1 to T6). Parents will be emailed a link to an online initial questionnaire (T1) and then contacted annually and asked to complete either an ext...

Research paper thumbnail of The Conduct and Reporting of Child Health Research: An Analysis of Randomized Controlled Trials Published in 2012 and Evaluation of Change over 5 Years

The Journal of pediatrics, Jan 21, 2017

For child health randomized controlled trials (RCTs) published in 2012, we aimed to describe desi... more For child health randomized controlled trials (RCTs) published in 2012, we aimed to describe design and reporting characteristics and evaluate changes since 2007; assess the association between trial design and registration and risk of bias (RoB); and assess the association between RoB and effect size. For 300 RCTs, we extracted design and reporting characteristics and assessed RoB. We assessed 5-year changes in design and reporting (based on 300 RCTs we had previously analyzed) using the Fisher exact test. We tested for associations between design and reporting characteristics and overall RoB and registration using the Fisher exact, Cochran-Armitage, Kruskal-Wallis, and Jonckheere-Terpstra tests. We pooled effect sizes and tested for differences by RoB using the χ2 test for subgroups in meta-analysis. The 2012 and 2007 RCTs differed with respect to many design and reporting characteristics. From 2007 to 2012, RoB did not change for random sequence generation and improved for alloca...

Research paper thumbnail of Parent-observed thematic data on quality of life in children with autism spectrum disorder

Autism : the international journal of research and practice, 2017

Domains of quality of life in children with autism spectrum disorder have not previously been exp... more 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 ini...

Research paper thumbnail of Autism spectrum disorder: updated prevalence and comparison of two birth cohorts in a nationally representative Australian sample

BMJ Open, 2017

is based on well-known two cohorts of Australia, and their data are reliable. But there are some ... more is based on well-known two cohorts of Australia, and their data are reliable. But there are some questions: 1.in the abstract the third goal is a bit abrupt. Can the diagnosis of ASD be replaced by the parent report? 2.In the two cohorts especially B cohort, had children with ASD been trained in intervention? which will affect the results of symptoms and symptoms reported by teachers and parents. This manuscript is not explained in this regard. 3. It will affect their reporting that parents and teachers' understanding for ASD. This is only to remind the authors to pay attention to reporting bias. 4. "Prevalence" should be based on the premise of standardized diagnosis. Whether the teacher report can be used as a substitute for ASD diagnosis is questionable. 5. Figure 1 should be illustrated.

Research paper thumbnail of Risk factors for the development of autism spectrum disorder in children with tuberous sclerosis complex: protocol for a systematic review

Systematic Reviews, 2017

Background: Tuberous sclerosis complex (TSC) is an autosomal dominant condition, caused by mutati... more Background: Tuberous sclerosis complex (TSC) is an autosomal dominant condition, caused by mutations in either the TSC1 or TSC2 gene. It has widespread systemic manifestations and is associated with significant neurological morbidity. In addition to seizures and cerebral pathology including cortical tubers, subependymal nodules, subependymal giant cell astrocytoma and abnormal white matter, there are recognised neuropsychiatric difficulties including intellectual disability, autism spectrum disorder (ASD) and a range of learning and behaviour problems, recently conceptualised as "tuberous sclerosis-associated neuropsychiatric disorders", or "TAND". ASD in TSC is of particular importance because (1) it affects up to 50% of people with TSC and is a source of considerable difficulty for them and their families and (2) it provides a model for considering neurobiological pathways involved in ASD. Multiple factors are implicated in the development of ASD in TSC, including (1) seizures and related electrophysiological factors, (2) cerebral pathology, (3) genotype and (4) child characteristics. However, the neurobiological pathway remains unclear. We will conduct a systematic review to investigate and synthesise existing evidence about the role of these risk factors, individually and in combination, in leading to the development of ASD. Methods: Our review will report on all studies that include one or more of four predefined risk factors in the development of ASD in children with TSC. We will search five databases: MEDLINE, EMBASE, PubMed, The Cochrane Library and Web of Science (Conference Proceedings Citation Index). Studies will be selected for reporting after two authors independently (1) review all titles and abstracts, (2) read full text of all appropriate papers and (3) assess for bias using the Newcastle-Ottawa Scale recommended by the Guidelines for Meta-Analysis and Systematic Reviews of Observational Studies (MOOSE guidelines) and the ROBINS-I. Discussion: To our knowledge, this is the first systematic review investigating multiple risk factors in the development of ASD in children with TSC. Clarifying the evidence in this area will be important to researchers in the field and to clinicians providing prognostic information to families. Systematic review registration: PROSPERO CRD42016042841

Research paper thumbnail of Outcomes after scoliosis surgery for children with cerebral palsy: a systematic review

Developmental medicine and child neurology, Jul 6, 2017

This study aims (1) to evaluate and synthesize the evidence for the postoperative outcomes after ... more 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 m...

Research paper thumbnail of Methods for a longitudinal cohort of refugee children in a regional community in Australia

BMJ Open, 2016

Few studies explore the long-term health and well-being of refugee children. A longitudinal cohor... more Few studies explore the long-term health and well-being of refugee children. A longitudinal cohort of refugee children was created to determine health and well-being outcomes over time. This article describes the methodology used to conduct this study, including sample characteristics and effectiveness of recruitment and retention strategies. Participants: Newly arrived refugee children settling in a regional part of Australia aged 6 months to 15 years were recruited between 2009 and 2013 and 85% were followed for an average of 31 months. Method and design: General practitioners conducted health and pathology examinations shortly after arrival. Additional follow-up assessments were conducted by the research team at an average of 13 months after arrival for the first (year 2) and 31 months for the second (year 3) assessment. Children under 5 years had developmental and children aged 4-17 years had social-emotional screening. Families were assessed for risk and protective factors using a structured interview and the Social Readjustment Ratings Scale. Parent experience of the research was explored. Findings to date: Eligibility criteria were met by 158 of 228 (69%) newly arrived children, 61 of whom (39%) were enrolled. Retention was 100% (n=61) at year 2 and 85% at year 3. The study sample was younger than and had an over-representation of African refugees as compared to the eligible population. Parents reported that the research was respectful. Future plans: This study demonstrates that a longitudinal cohort study in refugee children is feasible and acceptable, and retention rates can be high. The establishment of this cohort provides the opportunity to analyse valuable data about the early settlement experience, risk and protective factors and long-term health and well-being outcomes in refugee children. These are necessary to identify refugee children in need of additional support and to guide future service delivery.

Research paper thumbnail of Diagnostic evaluation for autism spectrum disorder: a survey of health professionals in Australia

BMJ Open, 2016

Objectives: There is currently no agreed Australian standard for the diagnosis of autism spectrum... more Objectives: There is currently no agreed Australian standard for the diagnosis of autism spectrum disorder (ASD) even though there are specific diagnostic services available. We suspected inconsistency in the diagnostic practices of health professionals in Australia and aimed to assess these practices across the nation by surveying all relevant professional groups. Design: In this study, we completed a survey of 173 health professionals whose clinical practice includes participating in the diagnostic process for ASD in Australia. Participants completed an online questionnaire which included questions about their diagnostic setting, diagnostic practice and diagnostic outcomes in 2014-2015. Participants: Participants covered a range of disciplines including paediatrics, psychiatry, psychology, speech pathology and occupational therapy. All states and territories of Australia were represented.

Research paper thumbnail of Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods

American journal of medical genetics. Part A, Jan 21, 2015

Rett syndrome is a neurodevelopmental disorder mainly affecting females and associated with a mut... more Rett syndrome is a neurodevelopmental disorder mainly affecting females and associated with a mutation on the MECP2 gene. There has been no systematic evaluation of the domains of quality of life (QOL) in Rett syndrome. The aims of this study were to explore QOL in school-aged children with Rett syndrome and compare domains with those identified in other available QOL scales. The sample comprised 21 families registered with the Australian Rett Syndrome Database whose daughter with Rett syndrome was aged 6-18 years. Semi-structured telephone interviews were conducted with each parent caregiver (19 mothers, 2 fathers) to investigate aspects of their daughter's life that were satisfying or challenging to her. Qualitative thematic analysis using a grounded theory framework was conducted, and emerging domains compared with those in two generic and three disability parent-report child QOL measures. Ten domains were identified: physical health, body pain, and discomfort, behavioral and...

Research paper thumbnail of Role of the Australian Paediatric Surveillance Unit in monitoring communicable diseases of childhood

Communicable diseases intelligence, Jan 24, 1998

The Australian Paediatric Surveillance Unit (APSU) conducts active national surveillance of condi... more The Australian Paediatric Surveillance Unit (APSU) conducts active national surveillance of conditions affecting children, including communicable diseases and their complications. By mailing over 900 clinicians each month the APSU gathers national information, not available from other sources, about the incidence, demographic and clinical features of these conditions. In some conditions APSU data supplements that available from existing schemes. The APSU has monitored 20 conditions to date. Eight of these are communicable diseases or their complications, two have a possible infectious aetiology and one frequently presents with infection. Since its inception in 1993 the return rate of monthly report cards by the mailing list has increased from 88 per cent to 94 per cent. Return rate of questionnaires for the communicable diseases studied ranged from 74 per cent to 100 per cent. Studies have enabled estimation of disease incidence, identification of risk factors and possible preventiv...

Research paper thumbnail of Diagnostic tests for Autism Spectrum Disorders (ASD) in preschool children

Cochrane Database of Systematic Reviews, 2011

Research paper thumbnail of Regression in autism spectrum disorders

Journal of paediatrics and child health, 2015

Since the Journal of Paediatrics and Child Health was first published, there has been substantial... more Since the Journal of Paediatrics and Child Health was first published, there has been substantial change in the field of autism spectrum disorders (ASDs) with an exponential increase in the amount of funded and published research. In this paper, we focus on regression in children with ASD, a phenomenon that remains poorly understood. We discuss the implications of what we know about regression in ASD for the way we think about ASD more broadly and for paediatric practice.

Research paper thumbnail of A systematic review of the prevalence of parental concerns measured by the Parents’ Evaluation of Developmental Status (PEDS)indicating developmental risk

BMC Pediatrics, 2014

Background: Parental concerns about their children's development can be used as an indicator of d... more Background: Parental concerns about their children's development can be used as an indicator of developmental risk. We undertook a systematic review of the prevalence of parents' concerns as an indicator of developmental risk, measured by the Parents' Evaluation of Developmental Status (PEDS) and associated risk factors. Methods: Electronic databases, bibliographies and websites were searched and experts contacted. Studies were screened for eligibility and study characteristics were extracted independently by two authors. A summary estimate for prevalence was derived. Meta-regression examined the impact of study characteristics and quality. Meta-analysis was used to derive pooled estimates of the impact of biological and psychosocial risk factors on the odds of parental concerns indicating high developmental risk. Results: Thirty seven studies were identified with a total of 210,242 subjects. Overall 13.8% (95% CI 10.9-16.8%) of parents had concerns indicating their child was at high developmental risk and 19.8% (95% CI 16.7-22.9%) had concerns indicating their child was at moderate developmental risk. Male gender, low birth weight, poor/fair child health rating, poor maternal mental health, lower socioeconomic status (SES), minority ethnicity, not being read to, a lack of access to health care and not having health insurance were significantly associated with parental concerns indicating a high developmental risk. Conclusions: The prevalence of parental concerns measured with the PEDS indicating developmental risk is substantial. There is increased prevalence associated with biological and psychosocial adversity. Trial registration: PROSPERO Registration: CRD42012003215.

Research paper thumbnail of A comparison of two models of support for students with autism spectrum disorder in school and predictors of school success

Research in Autism Spectrum Disorders, 2019

Background: There is little comparative data on models of support for children with Autism spectr... more Background: There is little comparative data on models of support for children with Autism spectrum disorder (ASD) in school. The objectives of this research were (1) to compare the outcomes of two service delivery models (Autism Spectrum Australia satellite support class and Autism SA consultative model) that were designed to facilitate the support of children with ASD in mainstream schools and (2) to examine factors that were associated with successful outcomes. Method: A total of 90 students were followed 6-monthly for up to 7 rounds (3.5 years). Primary outcomes of interest included continuity of placement, school engagement and adjustment, perceived success of placement, and parent/teacher/principal satisfaction with service delivery. Results: Continuity of placement was relatively high in both models. There were no differences in child outcome across the models but the parents in the satellite model rated placement success higher, albeit in the context of high overall ratings in both groups. Parents and principals also rated satisfaction with support higher in the satellite model but transitions from the model into regular classes were low during the period of the study. Teacher rated academic skill predicted child social skills as well as engagement and adjustment, child problem behavior negatively predicted parent and teacher rating of placement success and adaptive behavior predicted teacher and principal rating of placement success. Conclusions: The present study offers insight into possible program and child related predictors of a range of outcome measures. Implications for the respective service delivery models and directions for future research are presented.

Research paper thumbnail of Perspectives on Regular and Support Class Placement and Factors that Contribute to Success of Inclusion for Children with ASD

Journal of International Special Needs Education, 2014

For young children with autism spectrum disorder (ASD) in regular schools, ASD specific service d... more For young children with autism spectrum disorder (ASD) in regular schools, ASD specific service delivery options include regular class placement with itinerant consultative support and support class placement. This study provided an examination of levels of parent, teacher and principal satisfaction with both regular class placement (n = 39) and a satellite support class option (n=35), which provides a more gradual transition into regular class. Given that regular class placement was the ultimate goal for children enrolled in the study, factors that either facilitated or acted as barriers to successful inclusion were examined for those children currently in regular classes. There were relatively high levels of parent, teacher and principal satisfaction with both satellite support class and regular class placement for children with ASD, with higher levels of parental satisfaction with satellite support placement. Across all respondents, the most frequently identified facilitating fac...

Research paper thumbnail of Agreement between concern about autism spectrum disorder at the time of referral and diagnosis, and factors associated with agreement

Journal of paediatrics and child health, Jan 4, 2017

This study examined the level of agreement between referral reason and diagnostic outcome for pre... more This study examined the level of agreement between referral reason and diagnostic outcome for pre-school aged children showing developmental delays and differences. In particular, the level of agreement when there was concern about autism spectrum disorder (ASD) was investigated. Clinical records for children (n = 677) assessed for developmental concerns at a multidisciplinary assessment clinic in Sydney, Australia, were examined. Referral reason and diagnostic outcome were compared. Referral sources and factors including age, developmental level and language functioning, were explored for potential association with the consistency between referral reason and diagnosis. Approximately 30% of children referred for developmental assessment with ASD concern were not diagnosed with ASD. Agreement between referral reason and diagnosis was similar regardless of referral source and child age. Of children where diagnostic outcome was discordant with referral reason, 24% had delayed language....

Research paper thumbnail of Incidence of autism spectrum disorders in children in two Australian states

Medical Journal of Australia, 2005

Australia 2005 www.mja.com.au Research ecently, there has been controversy about the incidence of... more Australia 2005 www.mja.com.au Research ecently, there has been controversy about the incidence of autism and whether it is increasing. Two reasons commonly suggested for a perceived increase are the lack of consistency of diagnoses and changes in diagnostic classification. 1-3 The diagnosis of autism has broadened since it was first described in 1943, 4 and there is evidence of poor agreement among clinicians about what constitutes autism for less severely affected children, 5 and whether subgroups of autism are distinct. 6 Variation in study methods has also been implicated as a cause of differences in reported prevalence. 1,7 The concept of a continuum of autism was first discussed in 1979, 8 and the terms

Research paper thumbnail of Consent and recruitment: the reporting of paediatric trials published in 2012

BMJ Paediatrics Open, 2018

ObjectivesWe evaluated 300 paediatric trials to determine: the consent and recruitment strategies... more ObjectivesWe evaluated 300 paediatric trials to determine: the consent and recruitment strategies used, who trial information was targeted to, how incentives were used and if they achieved their recruitment targets.MethodsFor this cross-sectional evaluation, we searched the Cochrane Central Register of Controlled Trials for paediatric trials published in 2012 and randomly selected 300 that reported on outcomes for participants aged ≤21 years. We collected data on consent and recruitment procedures for each trial and undertook descriptive analyses in SPSS statistics V.23.ResultsAll but one trial (99.7%) used a standard recruitment strategy. Most (92%) trials reported that consent was obtained but only 13% reported who obtained consent. Two-thirds (65%) of trials included school-aged participants, and of these 68% reported obtaining assent. Half (50%) of the trials reported who the trial information was targeted to. Most trials (75%) of school-aged participants targeted information to...

Research paper thumbnail of A descriptive analysis of non-Cochrane child-relevant systematic reviews published in 2014

BMC medical research methodology, 2018

Consumers, clinicians, policymakers and researchers require high quality evidence to guide decisi... more Consumers, clinicians, policymakers and researchers require high quality evidence to guide decision-making in child health. Though Cochrane systematic reviews (SRs) are a well-established source of evidence, little is known about the characteristics of non-Cochrane child-relevant SRs. To complement published descriptions of Cochrane SRs, we aimed to characterize the epidemiologic, methodological, and reporting qualities of non-Cochrane child-relevant SRs published in 2014. English-language child-relevant SRs of quantitative primary research published outside the Cochrane Library in 2014 were eligible for this descriptive analysis. A research librarian searched MEDLINE, CINAHL, Web of Science, and PubMed in August 2015. A single reviewer screened articles for inclusion; a second verified the excluded studies. Reviewers extracted: general characteristics of the review; included study characteristics; methodological approaches. We performed univariate analyses and presented the finding...

Research paper thumbnail of Twin-to-twin transfusion syndrome neurodevelopmental follow-up study (neurodevelopmental outcomes for children whose twin-to-twin transfusion syndrome was treated with placental laser photocoagulation)

BMC pediatrics, 2018

Twin-to-twin transfusion syndrome (TTTS) is a serious complication of 10-15% of twin or triplet p... more Twin-to-twin transfusion syndrome (TTTS) is a serious complication of 10-15% of twin or triplet pregnancies in which multiple fetuses share a single placenta. Communicating placental vessels allow one fetus (the donor) to pump blood to the other (the recipient). Mortality rates without intervention are high, approaching 100% in some series, with fetal deaths usually due to cardiac failure. Surgical correction using laser photocoagulation of communicating placental vessels was developed in the 1980s and refined in the 1990s. Since it was introduced in Victoria in 2006, laser surgery has been performed in approximately 120 pregnancies. Survival of one or more fetuses following laser surgery is currently > 90%, however the neurodevelopmental outcomes for survivors remain incompletely understood. Prior to laser therapy, at least one in five survivors of TTTS had serious adverse neurodevelopmental outcomes (usually cerebral palsy). Current estimates of neurological impairment among su...

Research paper thumbnail of Protocol for a prospective longitudinal study investigating the participation and educational trajectories of Australian students with autism

BMJ open, Jan 23, 2018

Autism is associated with high cost to individuals, families, communities and government. Underst... more Autism is associated with high cost to individuals, families, communities and government. Understanding educational and participation trajectories during the school years, and factors influencing these, is fundamental to reducing financial and personal costs. The primary aim of this study is to document the trajectories of Australian students with autism during their education. The secondary aim is to examine personal (eg, student skills) and environmental (eg, school setting) factors associated with differing trajectories and outcomes. The cross-sequential longitudinal study will recruit two cohorts of 120 parents/caregivers of children with autism. Cohort 1 aged between 4 and 5 years and cohort 2 between 9 and 10 years to start the study. Information will be gathered from parents, teachers and school principals at six annual time points (T1 to T6). Parents will be emailed a link to an online initial questionnaire (T1) and then contacted annually and asked to complete either an ext...

Research paper thumbnail of The Conduct and Reporting of Child Health Research: An Analysis of Randomized Controlled Trials Published in 2012 and Evaluation of Change over 5 Years

The Journal of pediatrics, Jan 21, 2017

For child health randomized controlled trials (RCTs) published in 2012, we aimed to describe desi... more For child health randomized controlled trials (RCTs) published in 2012, we aimed to describe design and reporting characteristics and evaluate changes since 2007; assess the association between trial design and registration and risk of bias (RoB); and assess the association between RoB and effect size. For 300 RCTs, we extracted design and reporting characteristics and assessed RoB. We assessed 5-year changes in design and reporting (based on 300 RCTs we had previously analyzed) using the Fisher exact test. We tested for associations between design and reporting characteristics and overall RoB and registration using the Fisher exact, Cochran-Armitage, Kruskal-Wallis, and Jonckheere-Terpstra tests. We pooled effect sizes and tested for differences by RoB using the χ2 test for subgroups in meta-analysis. The 2012 and 2007 RCTs differed with respect to many design and reporting characteristics. From 2007 to 2012, RoB did not change for random sequence generation and improved for alloca...

Research paper thumbnail of Parent-observed thematic data on quality of life in children with autism spectrum disorder

Autism : the international journal of research and practice, 2017

Domains of quality of life in children with autism spectrum disorder have not previously been exp... more 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 ini...

Research paper thumbnail of Autism spectrum disorder: updated prevalence and comparison of two birth cohorts in a nationally representative Australian sample

BMJ Open, 2017

is based on well-known two cohorts of Australia, and their data are reliable. But there are some ... more is based on well-known two cohorts of Australia, and their data are reliable. But there are some questions: 1.in the abstract the third goal is a bit abrupt. Can the diagnosis of ASD be replaced by the parent report? 2.In the two cohorts especially B cohort, had children with ASD been trained in intervention? which will affect the results of symptoms and symptoms reported by teachers and parents. This manuscript is not explained in this regard. 3. It will affect their reporting that parents and teachers' understanding for ASD. This is only to remind the authors to pay attention to reporting bias. 4. "Prevalence" should be based on the premise of standardized diagnosis. Whether the teacher report can be used as a substitute for ASD diagnosis is questionable. 5. Figure 1 should be illustrated.

Research paper thumbnail of Risk factors for the development of autism spectrum disorder in children with tuberous sclerosis complex: protocol for a systematic review

Systematic Reviews, 2017

Background: Tuberous sclerosis complex (TSC) is an autosomal dominant condition, caused by mutati... more Background: Tuberous sclerosis complex (TSC) is an autosomal dominant condition, caused by mutations in either the TSC1 or TSC2 gene. It has widespread systemic manifestations and is associated with significant neurological morbidity. In addition to seizures and cerebral pathology including cortical tubers, subependymal nodules, subependymal giant cell astrocytoma and abnormal white matter, there are recognised neuropsychiatric difficulties including intellectual disability, autism spectrum disorder (ASD) and a range of learning and behaviour problems, recently conceptualised as "tuberous sclerosis-associated neuropsychiatric disorders", or "TAND". ASD in TSC is of particular importance because (1) it affects up to 50% of people with TSC and is a source of considerable difficulty for them and their families and (2) it provides a model for considering neurobiological pathways involved in ASD. Multiple factors are implicated in the development of ASD in TSC, including (1) seizures and related electrophysiological factors, (2) cerebral pathology, (3) genotype and (4) child characteristics. However, the neurobiological pathway remains unclear. We will conduct a systematic review to investigate and synthesise existing evidence about the role of these risk factors, individually and in combination, in leading to the development of ASD. Methods: Our review will report on all studies that include one or more of four predefined risk factors in the development of ASD in children with TSC. We will search five databases: MEDLINE, EMBASE, PubMed, The Cochrane Library and Web of Science (Conference Proceedings Citation Index). Studies will be selected for reporting after two authors independently (1) review all titles and abstracts, (2) read full text of all appropriate papers and (3) assess for bias using the Newcastle-Ottawa Scale recommended by the Guidelines for Meta-Analysis and Systematic Reviews of Observational Studies (MOOSE guidelines) and the ROBINS-I. Discussion: To our knowledge, this is the first systematic review investigating multiple risk factors in the development of ASD in children with TSC. Clarifying the evidence in this area will be important to researchers in the field and to clinicians providing prognostic information to families. Systematic review registration: PROSPERO CRD42016042841

Research paper thumbnail of Outcomes after scoliosis surgery for children with cerebral palsy: a systematic review

Developmental medicine and child neurology, Jul 6, 2017

This study aims (1) to evaluate and synthesize the evidence for the postoperative outcomes after ... more 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 m...

Research paper thumbnail of Methods for a longitudinal cohort of refugee children in a regional community in Australia

BMJ Open, 2016

Few studies explore the long-term health and well-being of refugee children. A longitudinal cohor... more Few studies explore the long-term health and well-being of refugee children. A longitudinal cohort of refugee children was created to determine health and well-being outcomes over time. This article describes the methodology used to conduct this study, including sample characteristics and effectiveness of recruitment and retention strategies. Participants: Newly arrived refugee children settling in a regional part of Australia aged 6 months to 15 years were recruited between 2009 and 2013 and 85% were followed for an average of 31 months. Method and design: General practitioners conducted health and pathology examinations shortly after arrival. Additional follow-up assessments were conducted by the research team at an average of 13 months after arrival for the first (year 2) and 31 months for the second (year 3) assessment. Children under 5 years had developmental and children aged 4-17 years had social-emotional screening. Families were assessed for risk and protective factors using a structured interview and the Social Readjustment Ratings Scale. Parent experience of the research was explored. Findings to date: Eligibility criteria were met by 158 of 228 (69%) newly arrived children, 61 of whom (39%) were enrolled. Retention was 100% (n=61) at year 2 and 85% at year 3. The study sample was younger than and had an over-representation of African refugees as compared to the eligible population. Parents reported that the research was respectful. Future plans: This study demonstrates that a longitudinal cohort study in refugee children is feasible and acceptable, and retention rates can be high. The establishment of this cohort provides the opportunity to analyse valuable data about the early settlement experience, risk and protective factors and long-term health and well-being outcomes in refugee children. These are necessary to identify refugee children in need of additional support and to guide future service delivery.

Research paper thumbnail of Diagnostic evaluation for autism spectrum disorder: a survey of health professionals in Australia

BMJ Open, 2016

Objectives: There is currently no agreed Australian standard for the diagnosis of autism spectrum... more Objectives: There is currently no agreed Australian standard for the diagnosis of autism spectrum disorder (ASD) even though there are specific diagnostic services available. We suspected inconsistency in the diagnostic practices of health professionals in Australia and aimed to assess these practices across the nation by surveying all relevant professional groups. Design: In this study, we completed a survey of 173 health professionals whose clinical practice includes participating in the diagnostic process for ASD in Australia. Participants completed an online questionnaire which included questions about their diagnostic setting, diagnostic practice and diagnostic outcomes in 2014-2015. Participants: Participants covered a range of disciplines including paediatrics, psychiatry, psychology, speech pathology and occupational therapy. All states and territories of Australia were represented.

Research paper thumbnail of Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods

American journal of medical genetics. Part A, Jan 21, 2015

Rett syndrome is a neurodevelopmental disorder mainly affecting females and associated with a mut... more Rett syndrome is a neurodevelopmental disorder mainly affecting females and associated with a mutation on the MECP2 gene. There has been no systematic evaluation of the domains of quality of life (QOL) in Rett syndrome. The aims of this study were to explore QOL in school-aged children with Rett syndrome and compare domains with those identified in other available QOL scales. The sample comprised 21 families registered with the Australian Rett Syndrome Database whose daughter with Rett syndrome was aged 6-18 years. Semi-structured telephone interviews were conducted with each parent caregiver (19 mothers, 2 fathers) to investigate aspects of their daughter's life that were satisfying or challenging to her. Qualitative thematic analysis using a grounded theory framework was conducted, and emerging domains compared with those in two generic and three disability parent-report child QOL measures. Ten domains were identified: physical health, body pain, and discomfort, behavioral and...

Research paper thumbnail of Role of the Australian Paediatric Surveillance Unit in monitoring communicable diseases of childhood

Communicable diseases intelligence, Jan 24, 1998

The Australian Paediatric Surveillance Unit (APSU) conducts active national surveillance of condi... more The Australian Paediatric Surveillance Unit (APSU) conducts active national surveillance of conditions affecting children, including communicable diseases and their complications. By mailing over 900 clinicians each month the APSU gathers national information, not available from other sources, about the incidence, demographic and clinical features of these conditions. In some conditions APSU data supplements that available from existing schemes. The APSU has monitored 20 conditions to date. Eight of these are communicable diseases or their complications, two have a possible infectious aetiology and one frequently presents with infection. Since its inception in 1993 the return rate of monthly report cards by the mailing list has increased from 88 per cent to 94 per cent. Return rate of questionnaires for the communicable diseases studied ranged from 74 per cent to 100 per cent. Studies have enabled estimation of disease incidence, identification of risk factors and possible preventiv...

Research paper thumbnail of Diagnostic tests for Autism Spectrum Disorders (ASD) in preschool children

Cochrane Database of Systematic Reviews, 2011

Research paper thumbnail of Regression in autism spectrum disorders

Journal of paediatrics and child health, 2015

Since the Journal of Paediatrics and Child Health was first published, there has been substantial... more Since the Journal of Paediatrics and Child Health was first published, there has been substantial change in the field of autism spectrum disorders (ASDs) with an exponential increase in the amount of funded and published research. In this paper, we focus on regression in children with ASD, a phenomenon that remains poorly understood. We discuss the implications of what we know about regression in ASD for the way we think about ASD more broadly and for paediatric practice.

Research paper thumbnail of A systematic review of the prevalence of parental concerns measured by the Parents’ Evaluation of Developmental Status (PEDS)indicating developmental risk

BMC Pediatrics, 2014

Background: Parental concerns about their children's development can be used as an indicator of d... more Background: Parental concerns about their children's development can be used as an indicator of developmental risk. We undertook a systematic review of the prevalence of parents' concerns as an indicator of developmental risk, measured by the Parents' Evaluation of Developmental Status (PEDS) and associated risk factors. Methods: Electronic databases, bibliographies and websites were searched and experts contacted. Studies were screened for eligibility and study characteristics were extracted independently by two authors. A summary estimate for prevalence was derived. Meta-regression examined the impact of study characteristics and quality. Meta-analysis was used to derive pooled estimates of the impact of biological and psychosocial risk factors on the odds of parental concerns indicating high developmental risk. Results: Thirty seven studies were identified with a total of 210,242 subjects. Overall 13.8% (95% CI 10.9-16.8%) of parents had concerns indicating their child was at high developmental risk and 19.8% (95% CI 16.7-22.9%) had concerns indicating their child was at moderate developmental risk. Male gender, low birth weight, poor/fair child health rating, poor maternal mental health, lower socioeconomic status (SES), minority ethnicity, not being read to, a lack of access to health care and not having health insurance were significantly associated with parental concerns indicating a high developmental risk. Conclusions: The prevalence of parental concerns measured with the PEDS indicating developmental risk is substantial. There is increased prevalence associated with biological and psychosocial adversity. Trial registration: PROSPERO Registration: CRD42012003215.