By Dr Mairead O’Connor, Research Officer, National Screening Service
We’ve been working with a network of organisations and key stakeholders in Ireland to better understand and address knowledge gaps on cancer prevention and cancer screening in people with intellectual disabilities.
CUPID (Cancer - Understanding Prevention in Intellectual Disabilities) is a European-wide network and earlier this year members from Ireland held a workshop with key stakeholders from cancer organisations, health service organisations, advocacy groups and academic institutions doing research in the area of intellectual disability.
The aim of the workshop was to identify the issues affecting prevention, diagnosis and management of cancer among people with an intellectual disability in Ireland to inform and make recommendations for policy, practice and research.
Health inequalities
People with intellectual disabilities can have complex health needs and often experience significant health inequalities in relation to healthcare access, delivery of services, health literacy and discriminatory attitudes. Being overweight is common among people with intellectual disabilities, a factor known to increase the risk of some cancers.
Cancer screening
People with intellectual disabilities are now living longer, and like the general population, are at risk of developing cancer as they age. Research shows that people with intellectual disabilities are more likely to have their cancer diagnosed at a later stage and more likely to die from cancer than the rest of the population.
The National Cancer Strategy highlights the need to prioritise cancer awareness and prevention among disadvantaged groups. The strategy emphasises that early diagnosis will reduce mortality and improve survival. However, evidence on cancer incidence, survival, and mortality among people with an intellectual disability in Ireland is lacking.
While cancer screening is just one part of cancer prevention, there is a need for more research and good data on participation in cancer screening programmes in Ireland among people with intellectual disabilities. Data on cancer statistics in other countries is also scarce with only a handful of international studies having looked at cancer screening participation among this group.
The results of these studies show that people with intellectual disabilities are less likely to take part in screening than the rest of the population. We know that people with intellectual disabilities face several barriers to cancer screening including perceptions of fear, distress, and embarrassment; being unprepared for screening; negative interactions with healthcare professionals; a lack of knowledge about cancer screening; mobility issues; a high severity of ID; and a lack of ability to provide consent and communicate verbally.
Priority areas
Some of the main priorities identified for consideration in the workshop include:
- Research is required to understand and collect data around individual lifestyle and cancer risk factors among people with intellectual disabilities
- Reasonable accommodations need to be made for hospital or GP appointments to ensure people’s individual needs are met (for example, dimming the lights for someone with sensory issues when attending cancer screening)
- Increased training and education for healthcare professionals is needed around the different health needs of people with an intellectual disability
- More focus needs to be given to providing appropriate and accessible educational materials around cancer prevention and screening for people with intellectual disabilities.
Equity in screening
There is a need to increase participation in cancer screening among this vulnerable population, and to tailor cancer screening to meet the individual needs of people with intellectual disabilities.
Equity is a key priority for the National Screening Service in our strategy, Choose Screening – Together we can make a difference.
We work with communities to reduce inequity in screening and enable more people to take part, and we’ve recently published a 5-year strategic framework to improve equity in screening.
We’ve also published a new report outlining the findings of a study to assess the needs of disabled people in accessing our screening programmes. ‘Breaking down barriers’ is the first study of its type to be carried out in Ireland. Twenty disabled people participated in the study including people with intellectual disabilities. The study provides some understanding about the reasonable adjustments that can be made to make screening a person-centred service. It recommends strengthening our collaborative work with Disabled People’s Organisations and disability services to improve access to screening.
- The findings of the workshop were presented at a recent Irish Cancer Prevention Network event - ‘Cancer prevention in action: What we are doing in Ireland?’ - in October 2023 by Dr Mairead O’Connor, Research Officer at the National Screening Service and CUPID member.
- CUPID is a European-wide network of academics, researchers, non-governmental organisations, carers, people with intellectual disabilities and policy makers. It aims to develop collaborative links with the EU research and service provider communities to reach consensus on addressing the deficits in knowledge on cancer and cancer screening in people with intellectual disabilities.