Downloaded from http://adc.bmj.com/ on June 20, 2015 - Published by group.bmj.com
Case report
ARCHIVIST
Deaths in intellectual disability UK paediatricians will be familiar with the Confidential Inquiry system that has for some years been used to examine neonatal and childhood deaths. Now some of the investigators who developed that methodology have used it to study deaths of people with intellectual disabilities (ID) of all ages above 4 years, in the South West of England (Heslop P et al. Lancet online http://dx.doi.org/10.1016/S0140-6736(13)62026-7). Two hundred and forty seven deaths between June 2010 and May 2012 were reported to the Inquiry, and data on each was gathered from a number of sources. For each, a judgement was made by a panel on the extent to which the death was preventable, in different domains covering the individual, the family, and care and service provision. They identified a comparator group of deaths in those without ID, matched for age and sex, but not socioeconomic status. Comparisons were also made with government mortality statistics for England and Wales. Their findings were striking: 22% of people with ID were younger than 50 when they died, as compared to only 9% in the general population. The median age at death was 13 years younger for males, and 20 years younger for females. 37% of the deaths in people with ID were considered by the panel to be ‘amenable to change by good quality health care’ compared to 13% in the general population. A wide range of unsatisfactory social and medical factors were identified as being more frequent in the ID group compared to the non-ID deaths. In the absence of any generally accepted definition of ID they developed their own. Clearly the line between ID and normality is blurred, but worryingly even those with ‘mild’ disability had significantly higher mortality. Although only 14 of the 247 deaths were in children under 18, this Inquiry should concern us as paediatricians. We send our disabled patients out into the adult world with little of the supervision and support they received as children. Now we have hard data to argue for better services after transition. An editorial points out that the same problem has been found elsewhere, in the US and Ireland, and asks why more is not done to identify and protect those with ID (McCallion and McCarron http://dx.doi.org/10.1016/S0140-6736(13)62190-X). Controversially, they cite old studies suggesting that mortality rates were lower when people with ID were kept in institutions. Competing interests None. Provenance and peer review Commissioned; internally peer reviewed. Accepted 8 January 2014 Arch Dis Child 2014;99:299. doi:10.1136/archdischild-2014-305956
Williams GMG, et al. Arch Dis Child 2014;99:297–299. doi:10.1136/archdischild-2013-304654
299
Downloaded from http://adc.bmj.com/ on June 20, 2015 - Published by group.bmj.com
Deaths in intellectual disability
Arch Dis Child 2014 99: 299
doi: 10.1136/archdischild-2014-305956 Updated information and services can be found at: http://adc.bmj.com/content/99/3/299
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Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
Case report
ARCHIVIST
Deaths in intellectual disability UK paediatricians will be familiar with the Confidential Inquiry system that has for some years been used to examine neonatal and childhood deaths. Now some of the investigators who developed that methodology have used it to study deaths of people with intellectual disabilities (ID) of all ages above 4 years, in the South West of England (Heslop P et al. Lancet online http://dx.doi.org/10.1016/S0140-6736(13)62026-7). Two hundred and forty seven deaths between June 2010 and May 2012 were reported to the Inquiry, and data on each was gathered from a number of sources. For each, a judgement was made by a panel on the extent to which the death was preventable, in different domains covering the individual, the family, and care and service provision. They identified a comparator group of deaths in those without ID, matched for age and sex, but not socioeconomic status. Comparisons were also made with government mortality statistics for England and Wales. Their findings were striking: 22% of people with ID were younger than 50 when they died, as compared to only 9% in the general population. The median age at death was 13 years younger for males, and 20 years younger for females. 37% of the deaths in people with ID were considered by the panel to be ‘amenable to change by good quality health care’ compared to 13% in the general population. A wide range of unsatisfactory social and medical factors were identified as being more frequent in the ID group compared to the non-ID deaths. In the absence of any generally accepted definition of ID they developed their own. Clearly the line between ID and normality is blurred, but worryingly even those with ‘mild’ disability had significantly higher mortality. Although only 14 of the 247 deaths were in children under 18, this Inquiry should concern us as paediatricians. We send our disabled patients out into the adult world with little of the supervision and support they received as children. Now we have hard data to argue for better services after transition. An editorial points out that the same problem has been found elsewhere, in the US and Ireland, and asks why more is not done to identify and protect those with ID (McCallion and McCarron http://dx.doi.org/10.1016/S0140-6736(13)62190-X). Controversially, they cite old studies suggesting that mortality rates were lower when people with ID were kept in institutions. Competing interests None. Provenance and peer review Commissioned; internally peer reviewed. Accepted 8 January 2014 Arch Dis Child 2014;99:299. doi:10.1136/archdischild-2014-305956
Williams GMG, et al. Arch Dis Child 2014;99:297–299. doi:10.1136/archdischild-2013-304654
299
Downloaded from http://adc.bmj.com/ on June 20, 2015 - Published by group.bmj.com
Deaths in intellectual disability
Arch Dis Child 2014 99: 299
doi: 10.1136/archdischild-2014-305956 Updated information and services can be found at: http://adc.bmj.com/content/99/3/299
These include:
Email alerting service
Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
