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QUEST Study: Ascertaining Prevalence, Severity, Impact and Pervasiveness of Emotional and Behaviour Problems in Children with Autism

Child with challenging behaviourProject Areas:

To ascertain the prevalence, severity, impact and pervasiveness of a wide range of emotional and behaviour problems in a representative clinical sample of children aged 4-8 years who have an autism spectrum diagnosis, using parent and teacher completed questionnaires.

To determine the prevalence of psychiatric disorders using Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) and International Classification of Diseases (ICD-10) criteria among this young age group, and to explore whether there are important sex differences in the rate and type of psychiatric disorders.

To assess which of two questionnaires chosen by our 'consumer focus ' group is best for routine use in clinic, as indexed by their test-retest reliability and validity in relation to a gold standard diagnostic interview.

To determine the persistence and new onset of emotional and behavioural problems through repeat evaluation one year later.

Lead Researcher : Professor Gillian Baird

Institution: Guy's Hospital, London

Status: Completed - please see the reports of this study (Salazar et al, Chandler et al) which are listed below.

Comment/s:

  • The Clothworkers Foundation have generously donated £158,000 to this important project with remaining funds committed from the NHS and Research Autism.

Details of the study

This project focusses on the 'post-diagnosis' stage of parent/professional team involvement with the child. It uses parent expertise and knowledge about their child systematically to explore concerns about the type and impact of child emotional and behavioural problems on family and child function. This is with a view to planning appropriate interventions for behaviours of concern and impact that are likely to persist over time. It is important to examine whether the questionnaire responses are accurate (ie reliable) and readily map onto diagnostic domains of psychopathology, as represented in DSM-IV and ICD-10, since our knowledge of treatments is based on diagnosis. It is also not clear that questionnaires 'pick up' all relevant domains of psychopathology. If successful, such questionnaires could be incorporated into the 'framework for assessment' advocated by the National Service Framework for children (NSF) and the National Autism Plan.

Children with autism spectrum disorder constitute at least 1% of the population (2), with an incidence in males of 1.4%, and in females of 0.6% (3). There is a strong association of autism spectrum disorders with behaviour problems ranging from eating and sleeping difficulties to neuropsychiatric symptoms and challenging behaviour. In the 2004 UK survey of the mental health of children aged 5-16 years, 71% of parents of children with autism reported behaviour problems, 51% emotional, and 42% hyperactivity (3). In an Australian study (4) of 381 children and young people aged 4-18 years with autism compared with 581 controls with learning disability but without autism, those with autism had significantly higher total behaviour problem scores, with almost three quarters of the autism group scoring above 'clinical case cut off' for behaviour problems.

Emotional and behavioural difficulties occur across the entire range of intellectual ability. Validity of the reported symptoms as co-morbid neuro-psychiatric diagnoses has been established (5,6). Such behaviours have a significant impact on the child at school, at home and on family life including the other siblings (7,8). The UK child mental health survey (3) found that many parents had asked for specialist support over the previous 12 months, less than half being to child health or child and adolescent mental health services. Clinical experience indicates that many behaviour problems do not come to professional attention until the child is much older, when behaviours are more entrenched, families are more exhausted and there are secondary effects on other family members that are more difficult to remediate. When children are younger behaviour problems are often presumed to be part of an autism spectrum diagnosis rather than behaviours that can be individually treated in their own right. For example, symptoms of inattention, hyperactivity and impulsivity may respond well to interventions for ADHD. Anxiety disorders may be amenable to specific treatments and challenging behaviour to approaches focussing on communication styles and behavioural limit setting, with or without medication. Eating and sleeping problems also have particular and successful therapeutic approaches. Challenging behaviour is a particular concern since many studies show that in older children it is those in the group with autism, challenging behaviour and learning problems who are most likely to be prescribed and remain on anti-psychotics.

At the present time we have a limited knowledge of the prevalence of associated significant behaviour difficulties in young children with ASD diagnoses within any given population. Ascertaining the prevalence, types and impact of behaviour problems at 4-8 years in a systematic fashion could lead to the provision of specific interventions at a young age. Involving parents and teachers allows us to examine the pervasiveness of some emotional and behavioural problems. Establishing the validity of questionnaires that could be used systematically in every district service would enable timely access to such interventions. This study aims to assess behaviour across the full range of cognitive ability.We will assess a range of emotional and behaviour problems at home and at school. Currently services are stretched by the large numbers of children presenting with autistic spectrum disorders.The validation of a low cost quick screening tool will allow a sensible evidence-based approach to guide where scarce resources need to be most accurately targetted.


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Quick link:
http://www.researchautism.net/quest-study
Updated
25 Oct 2017