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Breakthrough screening tools for intellectual disability

Northumbria University researchers have developed pioneering screening questionnaires to help the identification of intellectual disability in children, adolescents and adults. These innovative screening tools, now used within the UK and internationally, are potentially life-changing for individuals and their families. Crucially, they can identify potentially vulnerable children, promote greater understanding of the child and help pinpoint support needs.  


During the past few decades there have been significant advances in healthcare and education of people with intellectual disability – a condition that affects around 2.2% of the global population and impacts abilities such as learning, communication, social interaction and self-care. Improvements to health and social care policies have meant greater social inclusion and health service provision­. Yet, despite this progress, people with intellectual disability are more likely to experience poorer health and die younger from preventable causes, compared to the general population.


Early identification of intellectual disability can enable children and adults to receive timely and appropriate healthcare, in addition to the educational and social support they need – improving their social, adaptive and cognitive functioning and overall life chances.


Professor Karen McKenzie at Northumbria University, along with colleagues in the NHS, the University of Edinburgh and University of Cambridge, has spent the past 15 years developing appropriate screening tools for intellectual disability. This groundbreaking work has led to the development of the Learning Disability Screening Questionnaire (LDSQ) for adults and the Child and Adolescent Intellectual Disability Screening Questionnaire (CAIDS-Q) for children and young people.


The use of LDSQ and CAIDS-Q has had a major impact on individuals, families, services and researchers. The questionnaires can help identify people with intellectual disability, determine their level of functioning, recognise potentially vulnerable adults and young people in criminal justice settings and increase awareness. This leads to greater understanding of those with intellectual disability and identification of support needs, such as in school.


Professor McKenzie is delighted with the widespread use of the screening questionnaires and the positive difference they are making to individuals, families and support services. To date, the screening tools are used in at least 129 NHS, council, forensic and other services across the UK and internationally. They have been integrated as part of a number of service pathways, particularly in criminal justice services in the UK and abroad and are also used to support victims of crime, for example at a Sexual Assault Referral Centre in Manchester, UK. The CAIDS-Q is now available online on the UK-based Learning Disability Matters for Families WebApp.


“The screening questionnaires are now used in a large number of services in the UK and internationally, including in intellectual disability, paediatric and criminal justice settings, to help identify expectant mothers with an intellectual disability and for research purposes,” explains Professor McKenzie. “They are recommended for use by a number of professional bodies, including the Royal College of Nursing, and are referred to in a number of guidance and policy documents, for example Public Health England and the Department of Health."


Plans for the next stage of this project include modifying the questionnaires for use within developing countries. The team will also examine the cost-effectiveness and longer term impact of using the screening questionnaires, particularly in relation to health and educational outcomes for people with an intellectual disability.

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