QUEST Follow-Up Study
Research type
Research Study
Full title
Follow-Up to the QUEST cohort at 10-14 years
IRAS ID
164628
Contact name
Emily Simonoff
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
ASD Spectrum Disorder (ASD) is a severe and lifelong developmental disability affecting about 1% of children and characterized by pervasive impairments in social communication and stereotyped and restricted interests. In addition to these core symptoms, 70-90% of young children with ASD have significant additional psychiatric disorders that impair their everyday functioning and reduce quality of life for themselves and their families.
In 2007-2008 our team recruited 277 families from two London health districts (Lewisham and Bromley) with children aged 4-8 years diagnosed with ASD (the “QUEST” study). We ascertained the prevalence, severity, impact and pervasiveness of a wide range of emotional and behavioural problems by parent and teacher report. Parents reported an overall prevalence of emotional and behaviour problems of more than 70%, including hyperactivity and inattention, fears and worries, oppositional behaviour and rages, sleep problems, sensory problems and self-injury. Teachers reported similar rates.
However, research shows that only ~20% of these children are expected to go on to develop severe and often entrenched maladaptive behaviours - problems so severe that they jeopardize the core elements of ordinary childhood experience: living with their families, attending local schools and participating in community activities. Relatively little is known about the factors that predict which children will go on to develop severe maladaptive behaviour. This is an important clinical and public health question because early identification would allow professionals to target resources and interventions to the most needy children and families.
Therefore in this current study we wish to follow-up the QUEST children now that they are aged 10 to 14 years old to identify the personal, family and wider environmental risk/protective factors that later predict severe maladaptive behaviour in adolescence. We will then further follow these children up again in two years’ time to determine which children have persistent severe maladaptive behaviour and to determine which factors were predictive. The present application deals with the first wave of follow-up data collection at 10-14 years (time 2). For the third time point data collection we will seek a major amendment when the assessment battery is decided following the current proposed follow-up study).
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
14/LO/2098
Date of REC Opinion
22 Dec 2014
REC opinion
Further Information Favourable Opinion