Abstract - Lancaster University



Final accepted versionTrends in Age-Standardised Mortality Rates and Life Expectancy of People with Learning Disabilities in Sheffield over a 33 Year PeriodEric Emerson, Centre for Disability Research, Lancaster University and Centre for Disability Research and Policy, University of Sydney (eric.emerson@lancaster.ac.uk) Gyles Glover, Public Health EnglandChris Hatton, Centre for Disability Research, Lancaster UniversityJohn Wolstenholme, Sheffield Health & Social Care NHS Foundation TrustAbstractPurposeTo describe trends in the age-standardised mortality rate and life expectancy of people with learning disabilities in Sheffield over three decades and to compare these with trends in the general population of England and Wales. Methods Data were extracted from the Sheffield Case Register and compared with data published by the Office for National Statistics for England and Wales.Findings There was a sustained reduction in age-standardised mortality rates and a sustained increase in life expectancy for people with intellectual disabilities over the 33 year period. These changes are extremely similar to those observed in the general population of England and Wales. DiscussionThere is little evidence of any closing of the gap in age-standardised mortality rates or life expectancy between people with intellectual disabilities and the general population.IntroductionStudies of mortality in people with intellectual disability have consistently shown higher death rates (even after allowance for age profile) and younger ages at death in comparison with people in the general population. PEVuZE5vdGU+PENpdGU+PEF1dGhvcj5CaXR0bGVzPC9BdXRob3I+PFllYXI+MjAwMjwvWWVhcj48

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ADDIN EN.CITE.DATA (Bittles et al., 2002; Coppus, 2013; Emerson & Hatton, 2014; Glover & Ayub, 2010; Heslop et al., 2013). For example, recent data from England indicates that the median age of death of people with intellectual disabilities remains considerably younger than that of the general population (for men 71 v 78 years; for women 65 v 83 years) ADDIN EN.CITE <EndNote><Cite><Author>Heslop</Author><Year>2013</Year><RecNum>4319</RecNum><DisplayText>(Heslop et al., 2013)</DisplayText><record><rec-number>4319</rec-number><foreign-keys><key app="EN" db-id="0tzwrr05aez223ea2r9xt9tgddvasf55dw2p">4319</key></foreign-keys><ref-type name="Report">27</ref-type><contributors><authors><author>Heslop, P</author><author>Blair, P</author><author>Fleming, P</author><author>Hoghton, M</author><author>Marriott, A</author><author>Russ, L</author></authors></contributors><titles><title>Confidential Inquiry Into Premature Deaths of People with Learning Disabilities</title></titles><dates><year>2013</year></dates><pub-location>Bristol</pub-location><publisher>Norah Fry Research Centre</publisher><urls></urls></record></Cite></EndNote>(Heslop et al., 2013). All cause mortality rates are approximately three times higher than in the general population, with mortality rates being particularly high for people with more severe disabilities, young adults, women, people with epilepsy and people with Down’s syndrome and other genetic causes of intellectual disability PEVuZE5vdGU+PENpdGU+PEF1dGhvcj5UeXJlcjwvQXV0aG9yPjxZZWFyPjIwMDk8L1llYXI+PFJl

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ADDIN EN.CITE.DATA (Bittles et al., 2002; Coppus, 2013; Patja, Iivanainen, Vesala, Oksansn, & Ruoppila, 2000; Tyrer & McGrother, 2009). However, for some groups of people with intellectual disabilities indicators of life expectancy have shown marked increases over the past few decades ADDIN EN.CITE <EndNote><Cite><Author>Baird</Author><Year>1988</Year><RecNum>4248</RecNum><DisplayText>(Baird &amp; Sadovnick, 1988; Coppus, 2013)</DisplayText><record><rec-number>4248</rec-number><foreign-keys><key app="EN" db-id="0tzwrr05aez223ea2r9xt9tgddvasf55dw2p">4248</key></foreign-keys><ref-type name="Journal Article">17</ref-type><contributors><authors><author>Baird, P A</author><author>Sadovnick, A D</author></authors></contributors><titles><title>Life expectancy in Down syndrome adults</title><secondary-title>Lancet</secondary-title></titles><periodical><full-title>Lancet</full-title></periodical><pages>1354-1356</pages><dates><year>1988</year></dates><urls></urls></record></Cite><Cite><Author>Coppus</Author><Year>2013</Year><RecNum>4532</RecNum><record><rec-number>4532</rec-number><foreign-keys><key app="EN" db-id="0tzwrr05aez223ea2r9xt9tgddvasf55dw2p">4532</key></foreign-keys><ref-type name="Journal Article">17</ref-type><contributors><authors><author>Coppus, A M</author></authors></contributors><titles><title>People with intellectual disability: what do we know about adulthood and life expectancy?</title><secondary-title>Developmental Disabilities Research Reviews</secondary-title></titles><periodical><full-title>Developmental Disabilities Research Reviews</full-title></periodical><pages>6-16</pages><volume>18</volume><dates><year>2013</year></dates><urls></urls></record></Cite></EndNote>(Baird & Sadovnick, 1988; Coppus, 2013). For example, estimated median age at death of people with Down’s syndrome increased from 9 years in 1929 to 49 in 1997 ADDIN EN.CITE <EndNote><Cite><Author>Yang</Author><Year>2002</Year><RecNum>4249</RecNum><DisplayText>(Yang, Rasmussen, &amp; Friedman, 2002)</DisplayText><record><rec-number>4249</rec-number><foreign-keys><key app="EN" db-id="0tzwrr05aez223ea2r9xt9tgddvasf55dw2p">4249</key></foreign-keys><ref-type name="Journal Article">17</ref-type><contributors><authors><author>Yang, Q </author><author>Rasmussen, S A </author><author>Friedman, J M</author></authors></contributors><titles><title>Mortality associated with Down’s syndrome in the USA from 1983 to 1997: A population-based study</title><secondary-title>Lancet</secondary-title></titles><periodical><full-title>Lancet</full-title></periodical><pages>1019-1025</pages><volume>359</volume><dates><year>2002</year></dates><urls></urls></record></Cite></EndNote>(Yang, Rasmussen, & Friedman, 2002) and is now estimated to be greater than 50 years ADDIN EN.CITE <EndNote><Cite><Author>Coppus</Author><Year>2013</Year><RecNum>4532</RecNum><DisplayText>(Coppus, 2013)</DisplayText><record><rec-number>4532</rec-number><foreign-keys><key app="EN" db-id="0tzwrr05aez223ea2r9xt9tgddvasf55dw2p">4532</key></foreign-keys><ref-type name="Journal Article">17</ref-type><contributors><authors><author>Coppus, A M</author></authors></contributors><titles><title>People with intellectual disability: what do we know about adulthood and life expectancy?</title><secondary-title>Developmental Disabilities Research Reviews</secondary-title></titles><periodical><full-title>Developmental Disabilities Research Reviews</full-title></periodical><pages>6-16</pages><volume>18</volume><dates><year>2013</year></dates><urls></urls></record></Cite></EndNote>(Coppus, 2013). The aims of this paper are to describe changes over three decades in age standardised mortality rates and life expectancy of people with intellectual disabilities in the city of Sheffield, and to compare these with trends over the same period for the general population of England and Wales. MethodData on mortality were extracted each year from the Sheffield Case Register over the 33 year period 1980-2012. The Sheffield Case Register (SCR), established in 1974, collects information on people with intellectual disabilities in Sheffield if: (1) they have a significantly reduced ability to understand new or complex information, or to learn new skills with a reduced ability to cope independently, and which started before adulthood, with a lasting effect on development; (2) they have used learning disability services consistently following an appropriate assessment; (3) they have a clinical condition which is a recognised cause of learning disability and/or they have a Statement of Educational Need by reason of a learning disability. ?Estimated coverage is good with only small numbers of families out of a registered population of over 3,700 choosing not to be registered.For each year from 1980-2012 inclusive data were extracted on: (1) the number of deaths of people with intellectual disabilities on the SCR in age ten-year age bands (0-9, 10-19, 20-29, 30-39, 40-49, 50-59, 60-69, 70-79, 80+); and (2) the total number of people with intellectual disabilities registered on the SCR in that year. Over this period there were 1,313 deaths recorded out of a sample of 84,262 person years. From these data we calculated crude mortality rates, age-standardised mortality rates and life expectancy.The age-specific mortality rate is the proportion of the people who died in a given year. Age-standardised mortality rates are adjusted to match the age profile of a ‘standard European population’ to take account of first the difference between the age profile of people with intellectual disabilities and that of the general population, and second changes in the age profile of populations over time (in this case people with intellectual disabilities in Sheffield). Life expectancy is a measure which summarises the whole profile of age specific death rates at a point in time. It is the average number of years a group of people would live, if throughout the time they spend in each agegroup they experienced the age group-specific death rates of the point for which it is calculated. This is obviously only a theoretical group since all except those who die very young are exposed to the death rates of different periods at different stages of their lives. However, it is simple to present and intuitively comprehensible. We used freely available tools from the former London and South East Public Health Observatories, both now part of Public Health England, to calculate age-standardised mortality rates and life expectancies. Life expectancies were calculated for rolling three year periods, partly because the numbers were too small for analysis of single years, and partly to align with the way our comparator national figures are published. We used data published by the Office for National Statistics (ONS) to estimate changes in age standardised mortality rates in the general population of England and Wales over the same period of time ADDIN EN.CITE <EndNote><Cite><Author>Office for National Statistics</Author><Year>2013</Year><RecNum>4485</RecNum><DisplayText>(Office for National Statistics, 2013)</DisplayText><record><rec-number>4485</rec-number><foreign-keys><key app="EN" db-id="0tzwrr05aez223ea2r9xt9tgddvasf55dw2p">4485</key></foreign-keys><ref-type name="Report">27</ref-type><contributors><authors><author>Office for National Statistics,</author></authors></contributors><titles><title>Deaths Registered in England and Wales (Series DR), 2012</title></titles><dates><year>2013</year></dates><pub-location>Swansea</pub-location><publisher>Office for National Statistics</publisher><urls></urls></record></Cite></EndNote>(Office for National Statistics, 2013). For comparison with the life expectancy findings from the Sheffield register, we used the interim life tables also published by ONS. These are published for rolling three year periods, for males and females separately. We calculated overall figures for persons by weighting for gender ratio at birth. ResultsTrends over time in under 75 age-standardised mortality rates for people with intellectual disabilities in Sheffield and the general population of England and Wales are presented in Figure 1. As can be seen, in 27 of the 33 years age-standardised mortality rates for people with intellectual disabilities were significantly higher than for the general population of England and Wales (the point estimate for England and Wales lying outside the 95% confidence intervals for people with intellectual disabilities). Both sets of data show reductions over time with almost identical downward linear trends. However, the absolute gap in mortality rates has remained constant at an average of 776 excess deaths per 100,000 among people with intellectual disabilities. The current 2012 age-standardised mortality rate for people with intellectual disabilities in Sheffield is similar to that reported in the general population at the beginning of the 1960s.[Insert Figure 1] Figure 2 shows the trends over time in life expectancy at birth. For the general population this has risen steadily over the 333 year time period from just under 74 years to almost 81 years. For people with intellectual disabilities the figure has fluctuated over the period studied at between 61% and 78% of this. Thus overall, the life expectancy at birth for people with intellectual disabilities in Sheffield has risen from around 51 years at the start of the 1980s to a little over 60 years in the two most recent years. The gradient of the overall trend line for people with intellectual disabilities indicates that life expectancy at birth is rising on average by 2.78 years per decade for people with intellectual disabilities and by 2.24 for the general population. The difference in these trends just fails to reach statistical significance (regressing the ratio figure against the year number gives a slope of +0.0015, but F (1, 29) = 3.26, p=0.08). In contrast with the figure for people in the general population, which shows a remarkably steady trend, the figure for people with intellectual disabilities appears to show some oscillation around the trend line. A close look at the trends in the age profile of people on the Sheffield register over the 33 years covered shows some obvious cohort patterns with, for example, a relatively large number of people in their twenties in the first decade, their thirties in the second and their forties in the third. The calculation grouped population and death figures into ten year age bands for each year. The oscillation may have arisen from the effect of this producing successively older and younger weightings within each of the ten year bands. This is important as the last three readings each show an upward movement in life expectancy which, on the basis of the pattern observed is likely to be followed by a fall. If the trend line is calculated without these points, the slope is still positive (+2.35 years per decade). [Insert Figure 2] In Figure 3 we present the age-specific mortality rates for people with intellectual disabilities in Sheffield for two periods (1980-1999, 2000-2012) with 95% confidence intervals calculated using Wilson’s method ADDIN EN.CITE <EndNote><Cite><Author>Eayres</Author><Year>2008</Year><RecNum>4534</RecNum><DisplayText>(Eayres, 2008)</DisplayText><record><rec-number>4534</rec-number><foreign-keys><key app="EN" db-id="0tzwrr05aez223ea2r9xt9tgddvasf55dw2p">4534</key></foreign-keys><ref-type name="Report">27</ref-type><contributors><authors><author>Eayres, D</author></authors></contributors><titles><title>Technical Briefing 3: Commonly used public health statistics and their confidence intervals</title></titles><dates><year>2008</year></dates><pub-location>University of York</pub-location><publisher>Association of Public Health Observatories</publisher><urls></urls></record></Cite></EndNote>(Eayres, 2008). As can be seen, mortality rates for people with intellectual disabilities have fallen at both ends of the age spectrum; under 20 years of age and over 70 years of age. However, these differences over time were only statistically significant for the 10-20 age group. The percentage change over time in mortality rates was highest for the two younger groups (60% reduction for 10-19, 43% reduction for 0-9) followed by the two older groups (19% for 70-80, 14% for 80+). Among ‘working age’ adults percentage change over time range from a 11% increase in mortality rates in the 20-29 year age-group to a 9% decrease in the 40-49 age-group. The increase in mortality in the 20-29 year age-group may have reflected the increased survival of children with multiple and complex health conditions.[Insert Figure 3] DiscussionOur results indicate that there was a sustained reduction in age-standardised mortality rates and a sustained increase in life expectancy for people with intellectual disabilities in Sheffield over the 33 year period investigated, changes which mirror those observed in the general population of England and Wales. There is little evidence of any closing of the gap in either age-standardised mortality rates or life expectancy between people with intellectual disabilities and the general population. The greatest reductions in age-standardised mortality rates for people with intellectual disabilities were seen among children and older adults.Three issues need to be kept in mind when considering the implications of these results. First, estimated changes in mortality rates and life expectancy of people with intellectual disabilities may have been influenced by changes in the coverage of the Case Register. For example, an increase in coverage to include a greater proportion of people with less severe intellectual disabilities would be associated with reduced overall mortality rates due to the association between more severe intellectual disability and increased mortality. Similarly, the increased survival of people with Down’s syndrome from the 1980s, when surgery for congenital heart defects became more widely available, and of people with severe and complex intellectual disability following premature birth will have influenced age-specific patterns in mortality rates. Second, the data are drawn from just one city in England and may not generalise to other areas. It should be noted, however, that recent life expectancy data for the general population of Sheffield show similar patterns to those observed in England and Wales ADDIN EN.CITE <EndNote><Cite><Author>Director of Public Health for Sheffield</Author><Year>2013</Year><RecNum>4533</RecNum><DisplayText>(Director of Public Health for Sheffield, 2013)</DisplayText><record><rec-number>4533</rec-number><foreign-keys><key app="EN" db-id="0tzwrr05aez223ea2r9xt9tgddvasf55dw2p">4533</key></foreign-keys><ref-type name="Report">27</ref-type><contributors><authors><author>Director of Public Health for Sheffield,</author></authors></contributors><titles><title>New Opportunities: Director of Public Health Report for Sheffield</title></titles><dates><year>2013</year></dates><pub-location>Sheffield</pub-location><publisher>Sheffield City Council</publisher><urls></urls></record></Cite></EndNote>(Director of Public Health for Sheffield, 2013).While keeping these caveats in mind, the clear message from these analyses is that while there have been sustained reductions in age-standardised mortality rates and sustained increases in life expectancy for people with intellectual disabilities over the last three decades, these changes closely mirror those observed in the general population, with little evidence of any closing of the gap between these two groups. 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ADDIN EN.CITE.DATA (Disability Rights Commission, 2006; Mencap, 2007, 2012; Michael, 2008; Parliamentary and Health Service Ombudsman and Local Government Ombudsman, 2009) and the importance of monitoring progress in closing the gap between people with intellectual disabilities and their peers ADDIN EN.CITE <EndNote><Cite><Author>Glover</Author><Year>2011</Year><RecNum>3401</RecNum><DisplayText>(Glover &amp; Emerson, 2011)</DisplayText><record><rec-number>3401</rec-number><foreign-keys><key app="EN" db-id="0tzwrr05aez223ea2r9xt9tgddvasf55dw2p">3401</key></foreign-keys><ref-type name="Report">27</ref-type><contributors><authors><author>Glover, G</author><author>Emerson, E</author></authors></contributors><titles><title>Data Gaps for Learning Disabilities: The information we need to monitor the health and healthcare of people with learning disabilities </title></titles><dates><year>2011</year></dates><pub-location>Durham</pub-location><publisher>Improving Health &amp; Lives: Learning Disabilities Observatory</publisher><urls></urls></record></Cite></EndNote>(Glover & Emerson, 2011).References ADDIN EN.REFLIST Baird, P. A., & Sadovnick, A. D. (1988). Life expectancy in Down syndrome adults. Lancet, 1354-1356. Bittles, A. H., Petterson, B. A., Sullivan, S. G., Hussain, R., Glasson, E. J., & Montgomery, P. (2002). The in?uence of intellectual disability on life expectancy. Journal of Gerontology, 57, 470-472. Coppus, A. M. (2013). People with intellectual disability: what do we know about adulthood and life expectancy? Developmental Disabilities Research Reviews, 18, 6-16. Director of Public Health for Sheffield. (2013). New Opportunities: Director of Public Health Report for Sheffield. Sheffield: Sheffield City Council.Disability Rights Commission. (2006). Equal Treatment - Closing the Gap. London Disability Rights Commission.Eayres, D. (2008). Technical Briefing 3: Commonly used public health statistics and their confidence intervals. University of York: Association of Public Health Observatories.Emerson, E., & Hatton, C. (2014). Health Inequalities and People with Intellectual Disabilities. Cambridge: Cambridge University Press.Glover, G., & Ayub, M. (2010). How People with Learning Disabilities Die. Durham: Improving Health & Lives: Learning Disabilities Observatory.Glover, G., & Emerson, E. (2011). Data Gaps for Learning Disabilities: The information we need to monitor the health and healthcare of people with learning disabilities Durham: Improving Health & Lives: Learning Disabilities Observatory.Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013). Confidential Inquiry Into Premature Deaths of People with Learning Disabilities. Bristol: Norah Fry Research Centre.Mencap. (2007). Death by Indifference. London: Mencap.Mencap. (2012). Death by indifference: 74 deaths and counting. A progress report 5 years on. London: Mencap.Michael, J. (2008). Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Independent Inquiry into Access to Healthcare for People with Learning Disabilities.Office for National Statistics. (2013). Deaths Registered in England and Wales (Series DR), 2012. Swansea: Office for National Statistics.Parliamentary and Health Service Ombudsman and Local Government Ombudsman. (2009). Six lives: the provision of public services to people with learning disabilities. London: Parliamentary and Health Service Ombudsman and Local Government Ombudsman.Patja, K., Iivanainen, M., Vesala, H., Oksansn, H., & Ruoppila, I. (2000). Life expectancy of people with intellectual disability: a 35-year follow up study. Journal of Intellectual Disability Research, 44, 591-599. Tyrer, F., & McGrother, C. (2009). Cause-specific mortality and death certificate reporting in adults with moderate to profound intellectual disabilities. Journal of Intellectual Disability Research, 53, 898-904. Yang, Q., Rasmussen, S. A., & Friedman, J. M. (2002). Mortality associated with Down’s syndrome in the USA from 1983 to 1997: A population-based study. Lancet, 359, 1019-1025. Figure 1: Age-Standardised Under 75 Mortality Rates for People with Intellectual Disabilities in Sheffield (1980-2012) with 95% Confidence Intervals and the Population of England and Wales (1980-2011). Trend lines show linear regressions.Figure 2: Life expectancy at birth, People with Intellectual Disabilities (ID) in Sheffield (with 95% Confidence Intervals) and the Population of England and Wales, rolling triennial figures, 1980-2012. Trend lines show linear regressions.Figure 3: Age-Specific Mortality Rates with Wilson’s 95% Confidence Intervals for People with Intellectual Disabilities in Sheffield (1980-1999 and 2000-2012) ................
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