Professor Cairns is Director of the Scottish Learning Disabilities Observatory, and Professor of Health and Neurodevelopmental Conditions in the School of Health and Wellbeing, at the University of Glasgow.
In this seminar, held at the Centre for Research in Intellectual and Developmental Disabilities (CIDD) at the University of Warwick on 25th April 2024, Professor Cairns outlined some of the work of the Scottish Learning Disabilities Observatory (SLDO), which produces and shares research about the health needs of people with learning disabilities in Scotland.
Why is a Learning Disabilities Observatory needed?
Professor Cairns began by describing the establishment of the SLDO by the Scottish Government in response to a growing recognition of the significant health inequalities faced by people with learning disabilities, and the need to address them.
In Scotland and elsewhere, people with learning disabilities typically die at a younger age, experience poorer health, and often have different and more complex health needs, compared to people without learning disabilities. However, there is relatively little health research which specifically identifies people with learning disabilities, or focuses on their needs.
Which areas of health are studied at the Scottish Learning Disabilities Observatory?
Professor Cairns outlined the broad range of health and wellbeing topics that SLDO researchers have been investigating. These include: the mental health of children and adults with learning disabilities and of family carers; physical health conditions such as respiratory diseases, cancer, and covid-19; and issues around medication such as the prescribing of multiple medications (polypharmacy), and the prescribing of medications that affect the brain (psychotropics), in people with learning disabilities.
Professor Cairns focused on the key areas of multi-morbidity, oral heath, cancer, inclusion, and stigma and discrimination.
Multi-morbidity
Multi-morbidity, or having more than one health condition, has been studied in the general population, noting that the findings produced are not necessarily applicable to people with learning disabilities. She described a 2018 study she led, which investigated the prevalence of health conditions and multi-morbidity in adults with learning disabilities. This study included over 1000 adults with a learning disability aged between 16 and 83 years, each of whom participated in a comprehensive 4-hour health assessment. This allowed the researchers to identify the most common physical health conditions in this group, and the number of health conditions each person had.
As Professor Cairns highlighted, many of the most common conditions found among people with learning disabilities were not only painful or disabling, but also potentially life-threatening: constipation, obesity, high blood pressure, swallowing difficulties, respiratory infections. These are largely treatable conditions which nevertheless are known to cause preventable and premature deaths in people with learning disabilities.
In terms of multi-morbidity, Professor Cairns shared that almost all of the people with learning disabilities in her study (98.7%) were found to have two or more physical health conditions. In fact, the average number of conditions that each person had was much higher, at 11. This contrasts starkly with a previous study of adults over 50 years old without learning disabilities, which found an average of just 4 or 5 health conditions per person.
Oral health
Professor Cairns moved on to discuss oral health in people with learning disabilities, an important and sometimes overlooked area of health, which the SLDO has investigated across a number of studies. She described a review conducted by her team that collated international research published between 2008 and 2018, highlighting that people with learning disabilities are more likely to experience tooth decay, gum disease, and dental extractions than people without learning disabilities.
Professor Cairns then highlighted some findings from another of her studies, which focused on adults with learning disabilities in the Glasgow area. Almost a third (31%) of the study group of people with learning disabilities had no teeth, which was double the figure for the general population (15.1%). Having fewer than 21 teeth – the threshold for considering someone not to have ‘functional dentition’ – was also very common among people with learning disabilities, affecting 42% of the group in the study. Professor Cairns explained the potential impact of this on a person’s ability to eat and speak, and the possible increased risk of choking for people without functional dentition.
Cancer
Professor Cairns then introduced the SLDO’s program of research on cancer and cancer screening. Improving cancer screening in people with learning disabilities is an area of particular concern, which several of the SLDO’s collaborative projects are currently investigating.
Professor Cairns and colleagues have investigated rates of cancer across all adults with learning disabilities in Scotland. This was made possible by a question in the Scottish census which asked whether there was a person with a learning disability living in the household. Linking this census data with health records allowed the researchers to identify 17,203 Scottish adults with learning disabilities, and how many of these had been diagnosed with and died from cancer between 2011 (the census year) and 2019.
Compared with the general population, the researchers found that adults with learning disabilities overall were less likely to be diagnosed with cancer. This did not correspond to lower rates of cancer deaths however, suggesting that detection of cancer is a key issue. In fact, there were some types of cancer which people with learning disabilities were less likely to be diagnosed with, but from which they were more likely to die. This included breast cancer and colorectal cancer; both of these are the subject of national screening programs (which aim to increase detection and reduce mortality – but this depends upon screening uptake).
Concerningly, Professor Cairns also highlighted that people with learning disabilities were more likely to be diagnosed with – and die from – metastatic cancer of unknown origin (cancer that was not detected until it had spread).
Working with people with learning disabilities
Professor Cairns then highlighted the important role that people with learning disabilities play in the work of the SLDO. She described two projects that were designed and produced in partnership with people with learning disabilities, in response to issues they had raised during previous collaborative work.
This Is Me is an online campaign which was developed in response to concerns individuals shared about their experiences of stigma and discrimination, and how this can be addressed. This Is Me saw the production of several short films to raise awareness and provide insight into the lives of individuals with learning disabilities and their families. These were widely viewed after being shared across social media and can be viewed here.
Professor Cairns described another innovative project, Research For Everyone, which resulted from discussions about health research often being difficult to access and understand, both for people with learning disabilities, and for the wider public. The SLDO assembled a team to address this, consisting of people with learning disabilities, family carers, charities, and researchers. With the help of a media company, the team carefully translated two complex research papers into a range of more understandable formats – animated films, podcasts, and infographics.
Professor Cairns shared one of the films, which explains a study reviewing evidence on depression and anxiety in cancer patients, and is available here. Professor Cairns and team now plan to draw upon their success within wider collaborative projects, having clearly demonstrated how access to the knowledge produced by research can be made more equal.
Tammy Rutter is a PhD student at the Centre for Research in Intellectual and Developmental Disabilities (CIDD) at the University of Warwick
