Mental Health Needs in Children/Young People with 22Q11DS Version 1
Research type
Research Study
Full title
Understanding mental health in children and young people and their families with 22q-11 deletion syndrome: informing nurse and allied health professionals led interventions
IRAS ID
163444
Contact name
Debbie Sell
Contact email
Sponsor organisation
Great Ormond Street Hospital for Children NHS Foundation Trust
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
22q11.2 deletion syndrome (22q11DS) is the most commonly occurring chromosomal deletion with a prevalence of 1:4000. It is a complex syndrome which is often characterized by medical and developmental difficulties including developmental delay, learning disabilities, palatal defects, language delay, severe speech disorders, behavioural problems, attention deficit hyperactivity disorder and autistic spectrum disorder. Furthermore, this syndrome represents one of the largest known genetic risk factors for schizophrenia. Approximately 25-30% of individuals with 22q11DS develop psychosis in adolescence or young adulthood and knowledge of this elevated risk is a source of considerable worry for individuals with 22q11DS and their families. A particularly unique and challenging aspect of 22q11DS is the evolving and changing nature of the behavioural, communication, emotional and psychiatric difficulties over time. Hence, families often face an unknown pathway ahead. Preliminary research suggests that the mental health problems of Children and Young (CYP) people with 22q11DS are under-recognised in the UK and that young adults do not receive planned transitions from child to adult mental health services. A recent consensus document commissioned by the UK 22q11DS charity, MaxAppeal, has called for better co-ordination of care and early access to support for mental health concerns for affected people. Parents and UK charities frequently express concern about professionals’ lack of recognition and understanding of 22q11DS and the absence of clear care pathways. There is a lack of systematic research on parents’ and affected individuals’ perspectives of their health care needs and how well these are met. The aim of this study is to gather information about the needs and experiences of CYP with 22q11DS and their families regarding psychiatric symptoms and access to mental health services and support. This information will be used to develop an evidence-based nurse/AHP-led intervention focusing on the unmet developmental, emotional and mental health needs of these individuals.
REC name
London - Queen Square Research Ethics Committee
REC reference
15/LO/0112
Date of REC Opinion
25 Mar 2015
REC opinion
Further Information Favourable Opinion