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Description: The physical health of people with intellectual disabilities has been identified as an area of ongoing concern and priority. Research in this area has increasingly focused on the occurrence of cancer in this population. However, establishing cancer incidence and prevalence has often been difficult due to incomplete population level data and a previously assumed homogeneity of people with intellectual disabilities’ within research. In fact, this is a diverse and heterogenous population, where the presence of certain conditions may increase or reduce the risk of various cancers throughout the life course. Recent data from a population based study in Sweden found that individuals with Intellectual Disabilities were at an increased risk of any cancer, as well as specific cancer types including oesophageal, stomach, intestine, colon, pancreas, uterus, kidney and other non-specific sites. While a study of cancer in deceased individuals with intellectual disabilities in England, indicated that they are at a 1.6 fold increased risk of any cancer before age 43, with females at a heightened risk of death from cancer compared with males, particularly in younger age groups. To date, there has been no review synthesising the available literature on awareness of cancer and the associated risk-factors and symptoms of cancer among people with intellectual disabilities. The present study will seek to address this by providing an extensive and inclusive overview of historical and current research trends in the area of cancer, risk-factor and symptom awareness, covering a 25 year period which coincides with the gradual de-institutionalisation of people with intellectual disabilities.The knowledge gleaned will assist in developing a greater understanding of the existing literature and help determine directions for future research, towards fulfilment of the various national and international targets, which have been set to improve cancer services and outcomes for people with intellectua disabilities. Existing systematic reviews, epidemiological data and several qualitative studies demonstrate that people with intellectual disabilities are significantly less likely to participate in national cancer screening programmes and experience marked difficulties in navigating the health system as a whole. Still, little is known about how people with intellectual disabilities understand cancer risk factors and symptoms. This scoping review aims to systematically identify and synthesise the published academic literature on intellectual disabilities cancer-related risk-factor and symptom awareness. The specific objectives are to; 1. Provide an overview of what is currently known about people with intellectual disabilities’ awareness of cancer related risk factors and symptoms. 2. Build an accessible database of existing scientific papers that explore awareness of cancer-related risk factors and symptoms among people with intellectual disabilities. 3. Observe and document historic and current research trends and identify gaps in the knowledge to determine prospective areas for future research.
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