Mortality in people with learning disability: risks, causes, and death certification findings in London

Two thousand people with learning disabilities registered as service users in two London districts were followed up for 8 years to ascertain, in those who died, age and cause of death and significant associations with early death. Respiratory disease was documented as the leading cause of death in 52% of the study population compared with only 15% of males and 17% of females in the whole population. People with learning disabilities have an increased risk of early death. Although the majority of deaths (83%) in the whole population occur in people aged 65 years and over, less than 50% of deaths in the study population were in this age group, and the risk of dying before the age of 50 was 58 times higher than in England and Wales generally. Early death was significantly associated with cerebral palsy, incontinence, problems with mobility, and residence in hospital. Death certificates were not found to be a reliable source of data about factors contributing to cause of death, and learning disabilities were rarely mentioned. The authors recommend an extension to the current format of the Medical Certificate of Death to include recording of chronic disabling conditions.