QUEST Follow-up Study Wave 3
Research type
Research Study
Full title
Follow-up of the QUEST cohort at 12-16 years
IRAS ID
216681
Contact name
Emily Simonoff
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Autism Spectrum Disorder (ASD) is a severe lifelong developmental disability affecting about 1% of the 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 2008 our team recruited 277 families from two London health districts (Lewisham and Bromley) with children 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. More than 70% of parents reported emotional and behavioural problems at a clinical level, and the majority of the children met diagnostic criteria for a co-occurring psychiatric disorder.
However, research shows that only ~20 of these children are expected to go on to develop severe maladaptive behaviours (SMB); problems so severe that they jeopardize all aspects of everyday life, from living with their families, attending local schools and participating in community activities. Relatively little is known about the factors that predict which children with ASD will go on to develop SMB.
In the last 18 months, we have followed up the QUEST children at age 11-15 (time 2) to examine the personal, family and wider environmental risk/protective factors that may later predict severe maladaptive behaviour or mental health problems in adolescence. We succeeded in following up 208 (75%) of the 277 original QUEST families at ages 11-15.In the third "wave" of the QUEST study (time 3), we wish to follow up the children again, now that they are aged 12-16, years old, to determine which young people have persistent severe maladaptive behaviour or mental health problems, and to determine which factors were predictive.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
17/LO/0397
Date of REC Opinion
28 Mar 2017
REC opinion
Favourable Opinion