Avoidable deaths in people with intellectual disabilities in England

Background The Department of Health (England) funded a three year Confidential Inquiry (CI) into the premature deaths of people with intellectual disabilities (2010-2013).

Methods The CI investigated the deaths of all people with intellectual disabilities in part of South West England. All died between June 2010-2012. We examined avoidable deaths by comparing the ICD-10 codes of underlying cause of death of people with intellectual disabilities and in England and Wales (2011). Avoidable deaths are those preventable by public health measures, amenable to good quality healthcare, or both preventable and amenable.

Results Total avoidable deaths in the cohort of 244 people with intellectual disabilities was 47%, in England and Wales it was 26%.

The proportion of deaths preventable by public health measures was similar in the two groups, but causes of death were different. In the general population preventable deaths were related to lifestyle factors (smoking, drinking and diet); in people with intellectual disabilities deaths relating to accidents and DVT were more common.

The proportion of deaths amenable to good quality healthcare was significantly different between the two groups. People with intellectual disabilities had more deaths related to epilepsy, congenital malformations and pneumonia than the general population.

Discussion This is the first UK mortality study of people with intellectual disabilities which goes beyond age and cause of death data, and specifically reviews avoidable deaths. Mortality in people with intellectual disabilities could be reduced by paying attention to specific causes of death, and improving the quality of healthcare.