QUEST 3 Additions

• Research type

  Research Study

• Full title

  Follow-up of the QUEST Cohort - Wave 3 Additions

• IRAS ID

  274495

• Contact name

  Emily Simonoff

• Contact email

  emily.simonoff@kcl.ac.uk

• Sponsor organisation

  King's College London

• Duration of Study in the UK

  0 years, 5 months, 1 days

• Research summary

  Autism Spectrum Disorder (ASD) is a severe lifelong developmental disability affecting about 1% of the children and characterized by impaired social communication and stereotyped and restricted interests. 70-90% of 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 with children 4-8 years diagnosed with ASD (the "QUEST" study). We ascertained the prevalence, severity, and impact 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 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 mental health/behavioural problems; problems so severe that they jeopardize all aspects of everyday life. Relatively little is known about the factors that predict which children with ASD will be affected.
  In 2015-16 we followed up the QUEST young people at age 11-15 (wave 2) to examine the personal, family and wider environmental risk/protective factors that may predict severe mental health/behavioural problems in adolescence. We succeeded in following up 211 (76%) of the 277 original QUEST families. In 2017-18 we followed up the sample at age 13-17 (wave 3) to determine a) which young people had persistent mental health/behavioural problems, and b) which factors were predictive. We succeeded in following up 214 (77%) of the original QUEST families. Since then, we have been processing and analysing the data. At this point, the addition of DNA samples and family history information would provide us with valuable information on additional potential additional risk factors.

• REC name

  London - Camden & Kings Cross Research Ethics Committee

• REC reference

  20/LO/0625

• Date of REC Opinion

  1 Jun 2020

• REC opinion

  Favourable Opinion