[Show abstract][Hide abstract] ABSTRACT: To examine whether adiposity is associated with an impaired quality of life (an individual's perception of their life) in general population samples in early adolescence.
Relationships between a direct measure of adiposity (fat mass index from bioimpedance) and a proxy measure (waist circumference), and a generic (KIDSCREEN-27) and a weight-specific measure of health-related quality of life (HRQoL, Impact of Weight on Quality of Life-Kids (IWQOL-Kids)) were examined in a longitudinal population-based cohort of young adolescents aged 12 years (n=519). The effects of change in adiposity over time (from 7 years and 9 years) were also examined (n=331-445 in longitudinal analyses).
Impairment in HRQoL was associated with current adiposity but it was not predicted by earlier adiposity. At 12 years, higher adiposity was associated with lower Physical Well-Being on KIDSCREEN-27, and with lower Total Scores on the weight-specific IWQOL-Kids instrument, the latter particularly in girls.
Health and education professionals need to be aware in their clinical practice that higher adiposity impairs HRQoL in general populations of young adolescents. Further research would be useful to determine whether or not children of primary school age self-reporting lower HRQoL are more likely to develop higher adiposity later in adolescence or early adulthood.
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Archives of Disease in Childhood 06/2015; 100(8). DOI:10.1136/archdischild-2014-307498 · 2.91 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children's progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact.
To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.
The MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers.
The conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains 'Impairments', 'Activity Level Indicators', 'Participation', and 'Family Measures'. In review 1, 10,154 papers were sifted - 3091 by full text - and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a 'recommended battery' for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents).
This is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research.
Priorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention.
This study is registered as PROSPERO CRD42012002223.
The National Institute for Health Research Health Technology Assessment programme.
[Show abstract][Hide abstract] ABSTRACT: Recent research has investigated the capability of the Diagnostic and Statistical Manual for Mental Disorders (DSM-5) descriptions to identify individuals who should receive a diagnosis of Autism Spectrum Disorder (ASD) using standardised diagnostic instruments. Building on previous research investigating behaviours essential for the diagnosis of DSM-5 ASD, the current study investigated the sensitivity and specificity of a set of 14 items derived from the Diagnostic Interview for Social and Communication Disorders (DISCO Signposting set) that have potential for signposting the diagnosis of autism according to both the new DSM-5 criteria for ASD and ICD-10 criteria for Childhood Autism. An algorithm threshold for the Signposting set was calculated in Sample 1 (n = 67), tested in an independent validation sample (Sample 2; n = 78), and applied across age and ability sub-groups in Sample 3 (n = 190). The algorithm had excellent predictive validity according to best estimate clinical diagnosis (Samples 1 and 2) and excellent agreement with established algorithms for both DSM-5 and ICD-10 (all samples). The signposting set has potential to inform our understanding of the profile of ASD in relation to other neurodevelopmental disorders and to form the basis of a Signposting Interview for use in clinical practice. (C) 2014 The Authors. Published by Elsevier Ltd.
Research in Autism Spectrum Disorders 01/2015; 9. DOI:10.1016/j.rasd.2014.10.003 · 2.96 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Background
The PACT randomised-controlled trial evaluated a parent-mediated communication-focused treatment for children with autism, intended to reduce symptom severity as measured by a modified Autism Diagnostic Observation Schedule-Generic (ADOS-G) algorithm score. The therapy targeted parental behaviour, with no direct interaction between therapist and child. While nonsignificant group differences were found on ADOS-G score, significant group differences were found for both parent and child intermediate outcomes. This study aimed to better understand the mechanism by which the PACT treatment influenced changes in child behaviour though the targeted parent behaviour.Methods
Mediation analysis was used to assess the direct and indirect effects of treatment via parent behaviour on child behaviour and via child behaviour on ADOS-G score. Alternative mediation was explored to study whether the treatment effect acted as hypothesised or via another plausible pathway. Mediation models typically assume no unobserved confounding between mediator and outcome and no measurement error in the mediator. We show how to better exploit the information often available within a trial to begin to address these issues, examining scope for instrumental variable and measurement error models.ResultsEstimates of mediation changed substantially when account was taken of the confounder effects of the baseline value of the mediator and of measurement error. Our best estimates that accounted for both suggested that the treatment effect on the ADOS-G score was very substantially mediated by parent synchrony and child initiations.Conclusions
The results highlighted the value of repeated measurement of mediators during trials. The theoretical model underlying the PACT treatment was supported. However, the substantial fall-off in treatment effect highlighted both the need for additional data and for additional target behaviours for therapy.
Journal of Child Psychology and Psychiatry 07/2014; 56(2). DOI:10.1111/jcpp.12291 · 5.67 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The objective of this study was to identify a set of ‘essential’ behaviours sufficient for diagnosis of DSM-5 Autism Spectrum Disorder (ASD). Highly discriminating, ‘essential’ behaviours were identified from the published DSM-5 algorithm developed for the Diagnostic Interview for Social and Communication Disorders (DISCO). Study 1 identified a reduced item set (48 items) with good predictive validity (as measured using receiver operating characteristic curves) that represented all symptom sub-domains described in the DSM-5 ASD criteria but lacked sensitivity for individuals with higher ability. An adjusted essential item set (54 items; Study 2) had good sensitivity when applied to individuals with higher ability and performance was comparable to the published full DISCO DSM-5 algorithm. Investigation at the item level revealed that the most highly discriminating items predominantly measured social-communication behaviours. This work represents a first attempt to derive a reduced set of behaviours for DSM-5 directly from an existing standardised ASD developmental history interview and has implications for the use of DSM-5 criteria for clinical and research practice.
Research in Autism Spectrum Disorders 06/2014; 8(6):701–715. DOI:10.1016/j.rasd.2014.03.017 · 2.96 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Background:
Children with autism spectrum disorder (ASD) have multiple co-existing emotional and behavioural conditions ranging from disorders of sensory perception to psychiatric co-morbidities. These co-existing conditions add a significant burden to the care of children with ASD.
* To identify the prevalence of parent/carer–reported unmet needs regarding support for co-existing conditions in children with ASD
* To understand the interactions between co-existing emotional and behavioural conditions, parents’ unmet needs regarding the services received and the impact on family.
Parents were recruited from either the population-based Database of children with ASD living in the North East of England (Daslne), or a research register - the Autism Spectrum Database – UK (ASD-UK). 630 families responded to a postal survey that included parent report questionnaires about co-morbid psychopathology (ASD-CC – Autism Spectrum Disorder Comorbidity – Child Version) and problem behaviour (ASD-PBC – Autism Spectrum Disorder Problem Behaviour – Child Version) in children. Questionnaires about parents’ unmet needs, and Impact on Family (IOF) were also completed. ASD-CC and ASD-PBC were used to define co-existing emotional and behavioural conditions. The parent questionnaire on unmet needs was developed with the help of parents of children with ASD and covered services received in relation to feeding, sleep, anxiety, hyperactivity, other behavioural problems and sensory issues.
More than two-thirds of families had at least one unmet need; only 30% of families had their needs for support for managing co-existing conditions fully met. Parents of children with moderate to severe impairment in co-existing emotional and behavioural conditions (as defined in the ASD-CC), had greater unmet needs than parents of children with no/minimal impairment (2.96 vs. 1.51; p=.000); they also reported greater impact on the family (45.45 vs. 35.39; p=.000).
Two linear regression models were built with total unmet needs and impact on the families as the criterion variables. For unmet service needs, total co-existing emotional and behavioural conditions (β=.440; p=.000) and younger age (β=.132;p=.003) contributed significantly to the model while type of diagnosis, gender, language level, school type and sibling/s with ASD did not make a significant contribution.
For impact on the family, total co-existing emotional and behavioural conditions (β=.513; p=.000), total unmet needs (β=.155; p=.000), siblings with ASD (β=.089; p=.015) and type of ASD diagnosis (β= -.082; p=.033) contributed significantly to the model while age, language level and type of school made no significant contribution.
Co-existing emotional and behavioural conditions had a direct significant impact on the family. Unmet service needs had an amplifying effect on this relationship. Improving support/intervention services for parents of children with ASD and co-existing emotional and behavioural conditions is necessary in an attempt to reduce the impact of these conditions on family life.
2014 International Meeting for Autism Research; 05/2014
[Show abstract][Hide abstract] ABSTRACT: Rare copy-number variation (CNV) is an important source of risk for autism spectrum disorders (ASDs). We analyzed 2,446 ASD-affected families and confirmed an excess of genic deletions and duplications in affected versus control groups (1.41-fold, p = 1.0 × 10(-5)) and an increase in affected subjects carrying exonic pathogenic CNVs overlapping known loci associated with dominant or X-linked ASD and intellectual disability (odds ratio = 12.62, p = 2.7 × 10(-15), ∼3% of ASD subjects). Pathogenic CNVs, often showing variable expressivity, included rare de novo and inherited events at 36 loci, implicating ASD-associated genes (CHD2, HDAC4, and GDI1) previously linked to other neurodevelopmental disorders, as well as other genes such as SETD5, MIR137, and HDAC9. Consistent with hypothesized gender-specific modulators, females with ASD were more likely to have highly penetrant CNVs (p = 0.017) and were also overrepresented among subjects with fragile X syndrome protein targets (p = 0.02). Genes affected by de novo CNVs and/or loss-of-function single-nucleotide variants converged on networks related to neuronal signaling and development, synapse function, and chromatin regulation.
The American Journal of Human Genetics 04/2014; 94(5). DOI:10.1016/j.ajhg.2014.03.018 · 10.99 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The purpose of this study was to explore how atypical reactions to sensory stimuli contribute to the relation between restricted and repetitive behaviors and anxiety in children with autism spectrum disorders (ASD). In Study 1, factor analysis of restricted and repetitive behaviors was carried out using the Repetitive Behavior Questionnaire-2 (RBQ-2), completed by 120 parents of 2- to 17-year-olds with ASD. Two subtypes resulted: repetitive sensory and motor behaviors, and insistence on sameness, accounting for 40% of the variance. This two-factor solution was retained even when the sensory items of the RBQ-2 were removed. In Study 2, 49 of the same parents also completed the Spence Anxiety Scales and the Sensory Profile. The insistence on sameness factor was significantly associated with anxiety while the repetitive motor behaviors factor was not. The relation between anxiety and insistence on sameness was mediated by sensory avoiding and to a lesser extent by sensory sensitivity. Implications for arousal explanations of ASD and for clinical practice are discussed.
Research in Autism Spectrum Disorders 02/2014; 8(2):82–92. DOI:10.1016/j.rasd.2013.10.001 · 2.96 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Objective: Everyday decision making requires integration of a broad range of information from a variety of sources, including cognitive and emotional processes. For individuals with autism spectrum disorder (ASD), everyday decision making can be difficult. The mechanisms that underlie decision making in young people diagnosed with ASD have not been fully explored. Method: We studied children and young adolescents with autism spectrum disorder (ASD; n = 48) compared with an age- and ability-matched typical control group (CON; n = 54). We evaluated performance and psycho-physiological responsivity during the Iowa Gambling Task (IGT), an affective decision-making task. Results: ASD participants were superior to control participants on overall performance (p < .05), especially because of significantly better learning in later stages of the task. While both groups showed robust and equal psycho-physiological arousal to disadvantageous decks, the groups differed in their choice of card type, with the CON group choosing more often from the frequent-gain disadvantageous deck, despite occasional large losses; while the ASD group chose prominently from the advantageous decks. Conclusions: A decision-making style characterized by a drive to avoid potential loss rather than to seek possible reward may help decision making for ASD in some situations, but ultimately hinder functioning in relation to prosocial engagement and other complex situations where gain rather than punishment is the most effective motivating factor. (PsycINFO Database Record (c) 2013 APA, all rights reserved).
[Show abstract][Hide abstract] ABSTRACT: Aim:To investigate the acceptability and feasibility of adapted group therapy for anxiety in children with autism spectrum disorder in a pilot randomised controlled trial.Method:A total of 32 children aged 9-13 years were randomised to immediate or delayed therapy using the 'Exploring Feelings' manual (Attwood, 2004). Child and parent groups were run in parallel, for seven weekly sessions, under the supervision of experienced psychologists. The primary blinded outcome measures addressed change in overall functioning and in severity of the primary anxiety diagnosis after 3 months.Results:Children met diagnostic criteria for 1-6 anxiety disorders (median 3). At end point, both parents and children in the immediate therapy group were more likely to report a reduction in anxiety symptoms. Fidelity of delivery of the group therapy was high, and attendance was 91%.Conclusions:This pilot trial established that children and families were willing to be recruited and randomised, the outcome measures were acceptable, the format and content of the groups were feasible within UK child and adolescent mental health services, the intervention was appreciated by families and attrition was very small.
[Show abstract][Hide abstract] ABSTRACT: Aspects of family environment (FE) such as family support, organisational structure and levels of conflict can increase risk of Bipolar Disorder (BD) in offspring of BD parents.
The family environment of 16 BD and 23 healthy control (HC) families was assessed using the Family Environment Scale (FES). Canonical Correspondence Analysis (CCA) was used to determine the degree of variation in scores on the FES dimensions within each family and a Generalised Linear Modelling (GLM) approach was used to investigate the extent to which scores on the different FES dimensions differed between families.
On the FES, BD families experienced an environment with higher levels of conflict and lower levels of expressiveness, organisation, intellectual-cultural orientation and active-recreational orientation than healthy control families. Differences in FES scores were driven by presence of parental BD and total number of children in the family. However, socio-economic status (SES) was not found to have an effect in this study.
As an American instrument the FES may not have been sensitive enough to the cultural context of a UK sample. The relatively small sample size used may have limited the statistical power of the study.
Greater numbers of children have the same effect on levels of conflict as the presence of BD, while SES does not appear to be as important a factor in FE as previously thought. Our results suggest that family based interventions focusing on psychoeducation and improved communication within these families may address issues of conflict, organisation and expressiveness.
[Show abstract][Hide abstract] ABSTRACT: Parents of children with autism spectrum disorders (ASD) use a wide range of interventions including poorly evidenced dietary interventions. To investigate parents' and professionals' experience of dietary interventions and attitudes towards a proposed trial to evaluate the gluten free casein free diet (GFCFD). Survey of UK parents of children with ASD, and professionals. 258 parents and 244 professionals participated. 83 % of children had received a range of dietary manipulations; three quarters of professionals have been asked for advice about GFCFD. Respondents identified an inadequate evidence base for dietary interventions in ASD and suggested modifications to a proposed trial design. Both parents and professionals supported the need for further evaluation of dietary interventions in ASD.
Journal of Autism and Developmental Disorders 09/2013; 44(4). DOI:10.1007/s10803-013-1922-8 · 3.06 Impact Factor