The Scottish Learning Disabilities Observatory (SLDO; www.sldo.ac.uk) was established at the University of Glasgow in 2015. Our remit is to generate evidence, build understanding and identify solutions for the causes of poor health and health inequalities experienced by people with neurodevelopmental disorders.
According to Scotland’s 2011 census, people with intellectual disabilities or autism are seven times more likely to have a mental illness, and forty times more likely to have a physical illness, and die an average of 25 years earlier than people without neurodevelopmental disorders (see References 1-3 below).
Individuals with neurodevelopmental disorders are particularly challenging to recruit to research projects and present additional research difficulties (time-demands and costs due to their many carers, impairments in communication and reduced decision-making capacity for consent). The potential to rapidly advance knowledge in this area using linkage of eCohorts to health and prescribing data is therefore considerable.
Developing eCohorts for Neurodevelopmental disorders
The SLDO has identified electronic cohorts (eCohorts) of the entire Scottish population of children, young people, and adults with intellectual disabilities (N=26,349), with autism (N=31,712) and with both conditions (N=5,709), plus a comparator cohort of the rest of the Scottish population (N=5,243,051). These eCohorts can be linked to other educational, health, and social datasets.
Three research areas will be developed within this project:
1) Avoiding deaths of people with intellectual disabilities that would have been amenable to health care
People with intellectual disabilities have a greater proportion of deaths that could have been avoided through quality health care, compared to other people4 but this phenomenon remains poorly understood. We will link Scotland’s Census 2011 with NRS Death data and morbidity records to investigate mortality rates and causes of deaths to identify potentially modifiable risks.
2) Reducing inappropriate psychotropic prescribing for children and adults with intellectual disabilities and with autism
Antipsychotic drugs are prescribed to 20-25% of adults with intellectual disabilities, despite rates of psychosis of only 4%5. Using linkage between Scotland’s annual Pupil Census and prescribing information, health, and social data, we will investigate patterns, trends, and geographic variations in antipsychotic prescribing in children, young people and adults with intellectual disabilities, and with autism. We hope to identify potential predictors of over-prescribing and prescribing abuse, and to identify potential solutions.
3) Investigating mental/physical health and educational outcomes of children with neurodevelopmental disorders related to maternal factors
Using linkage of Scotland’s Pupil Census data to health, prescribing, education, social care, and maternity records, we will investigate the long-term mental and physical health and educational outcomes of children with neurodevelopmental disorders that are related to maternal factors. This may lead to future work to develop early-intervention approaches for children at high-risk based on maternal factors.
- Hughes-McCormack LA, Rydzewska E, Henderson A, MacIntyre C, Rintoul J, Cooper SA. Prevalence and general health status of people with intellectual disabilities in Scotland: A total population study. J Epidemiol Community Health 2018; 72: 78–85.
- Hughes-McCormack LA, Rydzewska E, Henderson A, MacIntyre C, Rintoul J, Cooper S-A. Prevalence of mental health conditions and relationship with general health in a whole-country population of people with intellectual disabilities compared with the general population. Br J Psychiatry Open 2017. doi:10.1192/bjpo.bp.117.005462.
- O’Leary L, Cooper SA, Hughes-McCormack L. Early death and causes of death of people with intellectual disabilities: A systematic review. J Appl Res Intellect Disabil 2018. doi:10.1111/jar.12417.
- Hosking FJ, Carey IM, Shah SM, Harris T, DeWilde S, Beighton C, et al. Mortality among adults with intellectual disability in England: Comparisons with the general population. Am J Public Health 2016. doi:10.2105/AJPH.2016.303240.
- Cooper SA, Smiley E, Morrison J, Williamson A, Allan L. Mental ill-health in adults with intellectual disabilities: Prevalence and associated factors. Br J Psychiatry 2007. doi:10.1192/bjp.bp.106.022483.