Deaths of people with intellectual disabilities in the UK

www.thelancet.com Vol 383 March 8, 2014 853 It is more than 15 years since the intellectual disabilities specialty was mired in controversy when data from California were reported, which suggested higher rates of mortality among people with intellectual disabilities living in the community compared with those living in institutions. At the time, this fi nding was regarded as an attack on the movement of people with intellectual disabilities into the community, and there were criticisms of research quality and eff orts to refute the fi ndings. Over time, the fi ndings stood and the methods used in studies to refute them were themselves challenged. Subsequently, people started asking important questions about the role of communitybased primary care and community hospital care in supporting the lives of people with intellectual disabilities living in the community. In The Lancet, Pauline Heslop and colleagues report the results of the Confi dential Inquiry into premature deaths of people with intellectual disabilities in the UK. Rather than being a criticism of community placements, it draws attention to serious questions remaining long after the California study and, in a diff erent national context, about the quality of health care being off ered to people with intellectual disabilities in local communities, this time as compared with the general population. The Confi dential Inquiry reviewed all deaths of people with intellectual disabilities who had been registered with a general practitioner in southwest England, and who died between June, 2010, and May, 2012. Deaths were described as avoidable, amenable (ie, could have been avoided in principle by medical knowledge and health care available at the time of death), or premature. Contributory factors were grouped into four domains: intrinsic to the individual, within the family and environment, care provision, and service provision. The deaths of a comparator group of people without intellectual disabilities but much the same in age, sex, and cause of death, and registered at the same general practices as those with intellectual disabilities, were also investigated. Deaths of people with intellectual disabilities in the UK The main question now is whether the trial by Kahn and colleagues has given us a defi nitive answer on the usefulness of ECS for the prevention of PTS. Although this is the largest and only placebo controlled study so far, some questions remain. What are the individual contributions of the placebo eff ect, suboptimum compliance, and patient characteristics to the lack of eff ectiveness? A multicentre randomised trial comparing usual care (ECS for 2 years) with individualised care based on Villalta scores is in progress (ClinicalTrials.gov, NCT01429714). This future study will hopefully give additional information on some open questions: is there any benefi t of treatment with ECS, which patients benefi t most, and what is the optimum treatment duration?