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Mortality in Adults with Moderate to Profound Intellectual Disability: A Population-Based Study

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Title: Mortality in Adults with Moderate to Profound Intellectual Disability: A Population-Based Study
Language: English
Authors: Tyrer, F., Smith, L. K., McGrother, C. W.
Source: Journal of Intellectual Disability Research. Jul 2007 51(7):520-527.
Availability: Blackwell Publishing. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8599; Fax: 781-388-8232; e-mail: customerservices@blackwellpublishing.com; Web site: http://www.blackwellpublishing.com/jnl_default.asp
Peer Reviewed: Y
Page Count: 8
Publication Date: 2007
Document Type: Journal Articles
Reports - Research
Descriptors: Urban Areas, Place of Residence, Intervals, Females, Mortality Rate, Down Syndrome, Mental Retardation, Foreign Countries, Comparative Analysis, Adults, Socioeconomic Status
Geographic Terms: United Kingdom
DOI: 10.1111/j.1365-2788.2006.00918.x
ISSN: 0964-2633
Abstract: Background: People with intellectual disability (ID) experience a variety of health inequalities compared with the general population including higher mortality rates. This is the first UK population-based study to measure the extent of excess mortality in people with ID compared with the general population. Method: Indirectly standardized all-cause and disease mortality ratios (SMRs) and exact Poisson confidence intervals were calculated by age and sex for all adults, aged 20 years or over, with moderate to profound ID living in Leicestershire and Rutland, UK, between 1993 and 2005. The general population of Leicestershire and Rutland, which has a population of approximately 700 000 individuals in this age range, was used for comparison. To explore differences within the study population, overall SMRs were also calculated by presence of Down syndrome and last place of residence (city or county). Results: Of 2436 adults identified, 409 (17%) died during 23 000 person-years of follow-up. Both all-cause and disease-specific mortality were around three times higher than the general population but varied considerably with age. The largest differences were observed in people in their twenties, where all-cause mortality was almost nine times higher in men (SMR = 883; 95% CI = 560-1325) and more than 17 times higher in women (SMR = 1722; 95% CI = 964-2840). At a particular disadvantage were people with Down syndrome and women with ID living in the city. Conclusions: The relatively high SMRs observed in young people and in women, particularly those living in inner city areas and with Down syndrome, deserve further investigation for possible explanations, including socio-economic factors.
Abstractor: Author
Number of References: 32
Entry Date: 2007
Accession Number: EJ764991
Database: ERIC
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  Value: <anid>AN0025198733;eul01jul.07;2019Jun04.10:26;v2.2.500</anid> <title id="AN0025198733-1">Mortality in adults with moderate to profound intellectual disability: a population-based study. </title> <p>Background  People with intellectual disability (ID) experience a variety of health inequalities compared with the general population including higher mortality rates. This is the first UK population‐based study to measure the extent of excess mortality in people with ID compared with the general population. Method  Indirectly standardized all‐cause and disease mortality ratios (SMRs) and exact Poisson confidence intervals were calculated by age and sex for all adults, aged 20 years or over, with moderate to profound ID living in Leicestershire and Rutland, UK, between 1993 and 2005. The general population of Leicestershire and Rutland, which has a population of approximately 700 000 individuals in this age range, was used for comparison. To explore differences within the study population, overall SMRs were also calculated by presence of Down syndrome and last place of residence (city or county). Results  Of 2436 adults identified, 409 (17%) died during 23 000 person‐years of follow‐up. Both all‐cause and disease‐specific mortality were around three times higher than the general population but varied considerably with age. The largest differences were observed in people in their twenties, where all‐cause mortality was almost nine times higher in men (SMR = 883; 95% CI = 560–1325) and more than 17 times higher in women (SMR = 1722; 95% CI = 964–2840). At a particular disadvantage were people with Down syndrome and women with ID living in the city. Conclusions  The relatively high SMRs observed in young people and in women, particularly those living in inner city areas and with Down syndrome, deserve further investigation for possible explanations, including socio‐economic factors.</p> <p>Keywords: Down syndrome; intellectual disability; Leicestershire; Mortality; Cohort</p> <p>Moderate to profound intellectual disability (ID), characterized by developmental intellectual impairment (IQ < 50), affects three to four per 1000 of the England population ([<reflink idref="bib5" id="ref1">5</reflink>]) and is often associated with a wide range of other disabilities and health problems ([<reflink idref="bib1" id="ref2">1</reflink>]). People with ID experience a variety of health inequalities compared with the general population. They are more likely to die younger ([<reflink idref="bib21" id="ref3">21</reflink>]; [<reflink idref="bib7" id="ref4">7</reflink>]; [<reflink idref="bib12" id="ref5">12</reflink>]; [<reflink idref="bib6" id="ref6">6</reflink>]), have other chronic medical conditions ([<reflink idref="bib3" id="ref7">3</reflink>]; [<reflink idref="bib11" id="ref8">11</reflink>]; [<reflink idref="bib23" id="ref9">23</reflink>]; [<reflink idref="bib20" id="ref10">20</reflink>]) and have unmet health needs ([<reflink idref="bib14" id="ref11">14</reflink>]; [<reflink idref="bib17" id="ref12">17</reflink>]). Although current policies aim to address these inequalities, the needs of people with ID have received little attention. This may reflect an assumption that such differences are inevitable consequences of the underlying condition.</p> <p>One simple measure of assessing health inequalities in people with ID is to explore differences in mortality compared with the general population. Standardized mortality ratios (SMRs) can be calculated to derive a measure of how many more deaths than expected (if the death rate in the general population were applied) are observed in the population of interest. Previous studies have all observed substantially higher SMRs in people with ID than in the general population, but the magnitude of these differences has differed considerably. In England, for instance, overall SMRs were found to be 9.6 in one London borough and 18.0 in another ([<reflink idref="bib12" id="ref13">12</reflink>]). Yet, in another London study, SMRs were found to be 1.6 ([<reflink idref="bib16" id="ref14">16</reflink>]). Elsewhere reported SMRs have varied between 2.0 for Sweden ([<reflink idref="bib7" id="ref15">7</reflink>]); 3.3 for the United States ([<reflink idref="bib4" id="ref16">4</reflink>]) and 4.9 for Australia ([<reflink idref="bib6" id="ref17">6</reflink>]). Many of these estimates are limited to small sample sizes and/or unrepresentative underlying populations. As they are often used for allocating resources and forecasting future need, it is important that they are generalizable to the ID population as a whole.</p> <p>It has been demonstrated that much of the excess mortality in the ID population occurs in younger people (under the age of 40 years) ([<reflink idref="bib12" id="ref18">12</reflink>]; [<reflink idref="bib27" id="ref19">27</reflink>]). Studies have also found higher SMRs in women than in men ([<reflink idref="bib7" id="ref20">7</reflink>]; [<reflink idref="bib6" id="ref21">6</reflink>]), but these differences are thought to reflect excess deaths from accidents, suicides and other violence in men in the general population, which result in comparatively better survival patterns in men with ID. Indeed, on excluding deaths from external causes, one study revealed higher mortality rates in men ([<reflink idref="bib27" id="ref22">27</reflink>]). In addition, people with more severe ID have been found to be at a particular disadvantage ([<reflink idref="bib7" id="ref23">7</reflink>]; [<reflink idref="bib27" id="ref24">27</reflink>]); an SMR of 8.4 has been reported in children and adolescents with moderate to profound ID compared with 1.4 for those with mild ID ([<reflink idref="bib4" id="ref25">4</reflink>]). Other factors found to increase premature mortality in this population are a greater number of disabilities ([<reflink idref="bib4" id="ref26">4</reflink>]), reduced mobility ([<reflink idref="bib31" id="ref27">31</reflink>]; [<reflink idref="bib12" id="ref28">12</reflink>]), presence of epilepsy ([<reflink idref="bib7" id="ref29">7</reflink>]), presence of cerebral palsy ([<reflink idref="bib7" id="ref30">7</reflink>]) and presence of Down syndrome ([<reflink idref="bib30" id="ref31">30</reflink>]).</p> <p>The aim of the present study is to measure the extent of health inequalities in people with moderate to profound ID and to explore possible explanations for these differences. Using data from a population‐based register of adults with ID, we describe all‐cause mortality by age and sex in people with ID who are living in Leicestershire and Rutland over a 13‐year period compared with the general population.</p> <hd id="AN0025198733-2">Methods</hd> <p>This study was carried out using the Leicestershire Learning Disability Register; an open cohort of adults with ID who are living in Leicestershire (including the city of Leicester) and Rutland, UK ([<reflink idref="bib19" id="ref32">19</reflink>]). Leicestershire and Rutland have a population size of 920 000, with approximately 700 000 adults aged 20 years or over ([<reflink idref="bib26" id="ref33">26</reflink>]). Enrolment to the register is based on a moderate, severe or profound developmental intellectual impairment ([<reflink idref="bib33" id="ref34">33</reflink>]) with adaptive behaviour problems ([<reflink idref="bib10" id="ref35">10</reflink>]) and the likely need for long‐term support. Ascertainment for the register using capture–recapture methodology ([<reflink idref="bib34" id="ref36">34</reflink>]) is estimated to be 95%.</p> <p>The register supports a rolling programme of structured interviews with carers of people with ID, which are carried out every 5–7 years and incorporate the Disability Assessment Schedule ([<reflink idref="bib13" id="ref37">13</reflink>]). The severity of an individual's ID is determined using questions on skill level and dependency, which are similar in nature to the Vineland Adaptive Behaviour Scale ([<reflink idref="bib29" id="ref38">29</reflink>]). This calculation is described in more detail elsewhere ([<reflink idref="bib2" id="ref39">2</reflink>]). The severity of the ID was categorized into: moderate (approximate IQ = 35–49); severe (approximate IQ = 20–34); and profound (approximate IQ < 20). People with mild ID who are less likely to rely on specialist services for their support and who therefore have lower ascertainment rates were excluded from this study.</p> <p>All adults with moderate to profound ID who were aged 20 years or over between 1 January 1993 and 31 December 2005 were included. The population was described in terms of age (10‐year bands), sex, severity of ID and presence of Down syndrome. Whether the individual's last known address was in the city of Leicester or in the counties of Leicestershire and Rutland was also reported.</p> <p>Since 1993, people enrolled on the register who have died have been identified using mortality data from the Office of National Statistics. Individuals who did not die and who were not lost to follow‐up (<emph>n</emph> = 1903) were assumed to be alive on 31 December 2005. The study period spanned 13 years; thus, the population denominator was measured in years of observation time per person (i.e. person‐years). A person could contribute person‐years to different age groups depending on their age during the study period. For example, an individual who was aged 25 years in 1993 and who was followed up for 10 years between 1993 and 2002 contributed 5 years to the 20–29‐year age band (1993−1997) and a further 5 years to the 30–39‐year age band (1998−2002). Person‐years were also calculated for comparison with the general population of Leicestershire and Rutland ([<reflink idref="bib25" id="ref40">25</reflink>]).</p> <p>Indirect SMRs and exact Poisson confidence intervals were calculated by age and sex for the study population. Up to eight causes of death for a given individual are recorded using the International Classification of Diseases (ICD) system: ICD‐9 ([<reflink idref="bib32" id="ref41">32</reflink>]) (pre‐2001) and ICD‐10 ([<reflink idref="bib33" id="ref42">33</reflink>]) (post‐2001). Deaths from external causes (accidental, suicide, homicide or undetermined)1 were then excluded from the analyses and SMRs were recalculated for disease mortality only. Using the same adjustment for age and sex, overall SMRs were also calculated by presence or absence of Down syndrome and by whether the participant's last place of residence was in the city or the county.</p> <hd id="AN0025198733-3">Results</hd> <p>A total of 2436 (≈3.5 per 1000 population) adults with moderate to profound ID were identified between 1993 and 2005, of whom 409 (17%) died during the 23 000 person‐years of follow‐up. The characteristics of the study population are shown in Table 1. The ID population was weighted heavily towards the young: almost two‐thirds of individuals (65%) were under the age of 50 years when they were last known to be alive. There were more men than women (57% and 43%), a similar proportion of individuals had moderate, severe and profound ID (31%, 37% and 33%, respectively) and around one‐fifth (19%) had Down syndrome. Slightly fewer individuals were residing in the city (45%) than in the county (55%) when they were last known to be alive. As expected, people who died were generally older: 60% of individuals died when they were aged 70 years or over, compared with 8% of individuals under the age of 50 years. Similarly more deaths were observed in people with profound ID, with Down syndrome and in those living in the city.</p> <p>1 Characteristics of individuals with moderate to profound ID living in Leicestershire and Rutland, UK: 1993−2005</p> <p> <ephtml> <table><thead valign="bottom"><tr><th><bold>Characteristics </bold><bold>*</bold></th><th><bold>Persons <italic>n</italic> (%)</bold></th><th><bold>Deaths <italic>n</italic> (%)</bold></th></tr></thead><tbody valign="top"><tr><td>Total</td><td>2436 (100.0)</td><td>409 (16.8)</td></tr><tr><td>Age (years)</td></tr><tr><td> 20–29</td><td> 511 (21.0)</td><td> 38 (7.4)</td></tr><tr><td> 30–39</td><td> 580 (23.8)</td><td> 46 (7.9)</td></tr><tr><td> 40–49</td><td> 502 (20.6)</td><td> 45 (9.0)</td></tr><tr><td> 50–59</td><td> 423 (17.4)</td><td> 95 (23.4)</td></tr><tr><td> 60–69</td><td> 254 (10.4)</td><td> 85 (33.5)</td></tr><tr><td> 70+</td><td> 166 (6.8)</td><td>100 (60.2)</td></tr><tr><td>Sex</td></tr><tr><td> Male</td><td>1383 (56.8)</td><td>228 (16.5)</td></tr><tr><td> Female</td><td>1053 (43.2)</td><td>181 (17.2)</td></tr><tr><td>Severity of intellectual disability</td></tr><tr><td> Moderate</td><td> 751 (30.8)</td><td>101 (13.4)</td></tr><tr><td> Severe</td><td> 894 (36.7)</td><td>147 (16.4)</td></tr><tr><td> Profound</td><td> 791 (32.5)</td><td>161 (20.3)</td></tr><tr><td>Down syndrome</td></tr><tr><td> Present</td><td> 462 (19.0)</td><td>105 (22.7)</td></tr><tr><td> Absent</td><td>1974 (81.0)</td><td>304 (15.4)</td></tr><tr><td>Last known address</td></tr><tr><td> City</td><td>1091 (44.8)</td><td>198 (18.1)</td></tr><tr><td> County</td><td>1345 (55.2)</td><td>211 (15.7)</td></tr></tbody></table> </ephtml> </p> <p>1 *  When last known to be alive if appropriate.</p> <p>In the general population, 116 361 people died between 1993 and 2005 during nine million person‐years of risk (Table 2). More women died than men over the study period and as expected the number of deaths grew with age, with more than three‐quarters (76%) of all deaths occurring in people aged 70 years or over. Compared with the ID population, the general population were generally older and there were comparatively fewer men (49%). In addition, a lower proportion of adults in the general population were living in the city (30%) compared with the ID population (45%).</p> <p>2 Number of deaths and person‐years at risk by age group and sex in adults with ID: 1993−2005</p> <p> <ephtml> <table><thead valign="bottom"><tr><th><bold>Age (years)</bold></th><th><bold>Population with learning disability</bold></th><th><bold>Population of Leicestershire and Rutland </bold><bold>*</bold><bold> (per 100)</bold></th></tr><tr><th><bold>Males Deaths (PY)</bold></th><th><bold>Females Deaths (PY)</bold></th><th><bold>Total Deaths (PY)</bold></th><th><bold>Males Deaths (PY)</bold></th><th><bold>Females Deaths (PY)</bold></th><th><bold>Total </bold><bold>†</bold><bold> Deaths (PY)</bold></th></tr></thead><tbody valign="top"><tr><td>All ages</td><td>228 (13 017.5)</td><td>181 (10 059.8)</td><td>409 (23 077.3)</td><td>563.8 (43 284)</td><td>599.8 (45 823)</td><td>1163.6 (89 107)</td></tr><tr><td>20–29</td><td> 23 (3 438.0)</td><td> 15 (2 545.4)</td><td> 38 (5 983.5)</td><td>  6.4 (8 477)</td><td>  2.8 (8 270)</td><td>   9.3 (16 747)</td></tr><tr><td>30–39</td><td> 24 (3 454.1)</td><td> 22 (2 805.3)</td><td> 46 (6 259.5)</td><td>  9.8 (8 949)</td><td>  5.9 (9 026)</td><td>  15.6 (17 975)</td></tr><tr><td>40–49</td><td> 23 (2 660.6)</td><td> 22 (2 131.4)</td><td> 45 (4 792.0)</td><td> 19.8 (8 283)</td><td> 13.4 (8 245)</td><td>  33.2 (16 528)</td></tr><tr><td>50–59</td><td> 63 (2 015.6)</td><td> 32 (1 323.7)</td><td> 85 (3 339.2)</td><td> 44.1 (7 123)</td><td> 28.4 (7 108)</td><td>  72.4 (14 231)</td></tr><tr><td>60–69</td><td> 43 (949.3)</td><td> 42 (786.9)</td><td> 85 (1 736.2)</td><td> 94.0 (5 261)</td><td> 59.5 (5 537)</td><td>  15.3 (10 798)</td></tr><tr><td>70+</td><td> 52 (499.9)</td><td> 48 (467.1)</td><td>100 (966.9)</td><td>389.8 (5 191)</td><td>489.9 (7 637)</td><td> 879.7 (12 828)</td></tr></tbody></table> </ephtml> </p> <ulist> <item>2 * As population estimates for 2005 are not yet available, estimates for 2004 were used instead.</item> <item>3 †   Values do not always total those for males and females because of rounding.</item> <item>4 PY, person‐years at risk.</item> </ulist> <p>Overall mortality was more than three times higher in the ID population than in the general population (SMR = 324; 95% CI = 293–356), but varied considerably with age (Table 3). The largest differences were observed in the younger age groups, particularly in individuals aged 20–29 years where mortality was almost nine times higher in men (SMR = 883; 95% CI = 560–1325) and more than 17 times higher in women in their twenties (SMR = 1722; 95% CI = 964–2840). These effects diminished with increasing age, with adults in the older age groups having mortality rates more similar to the general population, suggesting a healthy survivor effect. Mortality was higher in women and this was consistent across all age groups.</p> <p>3 SMRs by age group and sex for adults with ID: 1993−2005</p> <p> <ephtml> <table><thead valign="bottom"><tr><th><bold>Age (years)</bold></th><th><bold>Males</bold></th><th><bold>Females</bold></th><th><bold>Totals</bold></th></tr><tr><th><bold>SMR</bold></th><th><bold>95% CI</bold></th><th><bold>SMR</bold></th><th><bold>95% CI</bold></th><th><bold>SMR</bold></th><th><bold>95% CI</bold></th></tr></thead><tbody valign="top"><tr><td>All ages*</td><td>286</td><td>250–326</td><td> 363</td><td>312–420</td><td> 324</td><td>293–356</td></tr><tr><td>20–29</td><td>883</td><td>560–1325</td><td>1722</td><td>964–2840</td><td>1150</td><td>814–1578</td></tr><tr><td>30–39</td><td>636</td><td>407–946</td><td>1210</td><td>758–1832</td><td> 845</td><td>619–1127</td></tr><tr><td>40–49</td><td>363</td><td>230–433</td><td> 634</td><td>397–959</td><td> 468</td><td>341–626</td></tr><tr><td>50–59</td><td>505</td><td>388–646</td><td> 606</td><td>415–856</td><td> 559</td><td>452–683</td></tr><tr><td>60–69</td><td>254</td><td>184–342</td><td> 497</td><td>358–672</td><td> 345</td><td>275–426</td></tr><tr><td>70+</td><td>139</td><td>103–182</td><td> 160</td><td>118–212</td><td> 151</td><td>123–183</td></tr></tbody></table> </ephtml> </p> <ulist> <item>5 *  Overall SMRs were derived by totalling the observed and expected number of deaths in each age group.</item> <item>6 SMR standardized mortality ratio.</item> </ulist> <p>On excluding deaths from external injury from the study population and the general population, the threefold increase in mortality for people with ID remained (SMR = 306; 95% CI = 275–339). However, the differences between younger men and women narrowed. This was most noticeable in people in their twenties where the male to female ratio of 1:1.95 lowered to 1:1.17 on excluding external causes of death (SMR = 1947 for men and SMR = 2271 for women).</p> <p>Figure 1 shows the overall SMR for people with and without Down syndrome and whether their last known address was in the city or the country. Substantially more deaths than expected were observed in people with Down syndrome than in those without (SMR = 760 vs. SMR = 270). Similarly higher SMRs were observed in women whose last place of residence was in the city than in the county (SMR = 433 vs. SMR = 309), but not in men (SMR = 267 vs. SMR = 279)</p> <p>Graph: 1 Overall indirectly standardized mortality ratios (SMRs) for people with and without Down syndrome and by last place of residence (city or county). *For city and county comparisons, SMRs were derived by comparing people with ID in the city with the general population of the city of Leicester. Those with ID in the county were compared with the general population of the counties of Leicestershire and Rutland.</p> <hd id="AN0025198733-4">Discussion</hd> <p>We have found that all‐cause and disease‐specific mortality in a representative cohort of adults with moderate to profound ID is approximately three times that of the general population. Mortality was particularly high in young adults, in women (especially those in inner city areas) and in people with Down syndrome.</p> <p>This study has the advantage of being population‐based. The prevalence rate of 3.5 quoted for moderate to profound ID is similar to UK Government figures ([<reflink idref="bib5" id="ref43">5</reflink>]) and we are confident that our register contains a representative population of adults with ID in this severity range. One criticism of register‐based studies is that people with mild ID are under‐represented because they are less likely to use specialist services. We have addressed this by excluding people with mild ID from this study. However, this does mean that we are unable to comment on mortality in these individuals. In addition, while we would have liked to explore the interrelationships between Down syndrome, last place of residence and all‐cause/disease mortality, this was not possible because of limited sample size. Our findings suggest the need for large‐scale research to further explore these effects.</p> <p>The threefold increase in mortality compared with the general population that we have reported is consistent with most studies, which report SMRs of between 1.6 and 4.9 in children and adults with ID ([<reflink idref="bib7" id="ref44">7</reflink>]; [<reflink idref="bib16" id="ref45">16</reflink>]; [<reflink idref="bib4" id="ref46">4</reflink>]; [<reflink idref="bib6" id="ref47">6</reflink>]). However, this is substantially lower than the 10‐ and 16‐fold increase reported in two London cohorts by [<reflink idref="bib12" id="ref48">12</reflink>]). These differences in magnitude are particularly noticeable in view of the fact that this study also included people with mild ID who have comparatively lower SMRs ([<reflink idref="bib7" id="ref49">7</reflink>]; [<reflink idref="bib27" id="ref50">27</reflink>]), which suggests that there may be differences in the underlying populations studied. SMRs may have also been particularly high in the Hollins study because children and adolescents were included and mortality has been found to be particularly high in this age range ([<reflink idref="bib7" id="ref51">7</reflink>]). Our findings that three times more deaths than expected were observed in the adult ID population merely highlight the continuing inequalities faced by those who survive to adulthood.</p> <p>Within the study population, the highest SMRs were observed in younger people, which is consistent with previous research ([<reflink idref="bib7" id="ref52">7</reflink>]; [<reflink idref="bib27" id="ref53">27</reflink>]). Excess deaths in this age group may be due to improvements in neonatal and postnatal care meaning that children with ID are now living longer ([<reflink idref="bib8" id="ref54">8</reflink>]; [<reflink idref="bib24" id="ref55">24</reflink>]). These young adults may have long‐term and unavoidable chronic conditions which predispose them to an early death, where previously they would have died in childhood. We do not have information on morbidity in this Leicestershire population to assess whether this is the case.</p> <p>Higher SMRs were observed in women with ID (male to female ratio = 1:1.27). This relationship narrowed, but remained, even after excluding external causes of death (male to female ratio = 1:1.14). Similarly, we did not find any differences in the severity of ID for these men and women (31%, 37% and 32% of men and 30%, 36% and 33% of women had moderate, severe and profound ID, respectively). Previous research has also found that SMRs are higher in women compared with men ([<reflink idref="bib12" id="ref56">12</reflink>]; [<reflink idref="bib6" id="ref57">6</reflink>]). However, it is recognized that deaths from accidents, suicides or violence occur more often in young men without ID and are not as prevalent in young men with ID ([<reflink idref="bib27" id="ref58">27</reflink>]). Our results suggest that the disadvantages faced by women compared with men cannot be wholly explained by external injury.</p> <p>We found that SMRs were highest in people with Down syndrome, particularly in women. Although vast improvements in survival have been observed in people with Down syndrome in recent years ([<reflink idref="bib18" id="ref59">18</reflink>]; [<reflink idref="bib9" id="ref60">9</reflink>]), the presence of coexisting congenital abnormalities, coupled with an increased risk of other health conditions, such as leukaemia ([<reflink idref="bib35" id="ref61">35</reflink>]), hypothyroidism ([<reflink idref="bib22" id="ref62">22</reflink>]) and dementia ([<reflink idref="bib15" id="ref63">15</reflink>]), all contribute to excess deaths in this population. This may be particularly relevant to women with Down syndrome because they are more likely to have early menopause ([<reflink idref="bib28" id="ref64">28</reflink>]) and its associated health risks.</p> <p>An interesting finding emerged related to higher SMRs in women with ID who were living in the city of Leicester (ratio of city to county = 1.4:1). We found that this relationship remained on excluding causes of death from accidents, suicides or violence from the analyses (ratio = 1.5:1). In contrast, no differences in SMRs were observed in men by their place of residence. This finding could suggest a further disadvantage faced by women with ID who are living in inner city areas.</p> <p>It is difficult to assess deprivation in people with ID because their disability distorts all the common indicators of socio‐economic status, even including the location of residential accommodation. Approximately 50% of men and 44% of women with moderate to profound ID on the Leicestershire Learning Disability Register live in residential facilities. Of the group of individuals with a last known address in the city, a similar proportion of men and women were in residential accommodation when they died (48% of men and 47% of women). Further, no discernible differences were observed in the severity of ID for men and women who died (25%, 34% and 41% for men and 23%, 35% and 42% for women with moderate, severe and profound ID, respectively). However, we did find that more women who died in the city had Down syndrome (22% of men and 33% of women, respectively) and that this pattern was not observed in the county (24% of men and 25% of women), which may in part explain our findings.</p> <p>In 2001, the UK Government recognized the importance of addressing excess mortality within the ID population by recommending an exploration into 'the feasibility of establishing a confidential enquiry into mortality' ([<reflink idref="bib5" id="ref65">5</reflink>]). We hope that this study will go some way towards raising relevant issues, including social deprivation and inequities, for further exploration. It may be appropriate to focus on groups of individuals within the ID population where mortality is disproportionately high, in particular younger women living in inner city areas and women with Down syndrome.</p> <hd id="AN0025198733-5">Acknowledgements</hd> <p>We gratefully acknowledge the Leicestershire NHS Partnership Trust and the Department of Health for providing funding for this study. We would also like to acknowledge colleagues at the University of Leicester, in particular Cathy Thorp and Kate Williams. The Leicestershire Learning Disability Register has Leicestershire Ethics Committee approval.</p> <ref id="AN0025198733-6"> <title> Footnotes </title> <blist> <bibl id="bib1" idref="ref2" type="bt">1</bibl> <bibtext> ICD‐9 = E800–E999; ICD‐10 = U01–U02, V01–Y36, Y85–Y87 or Y89.</bibtext> </blist> </ref> <ref id="AN0025198733-7"> <title> References </title> <blist> <bibtext> Alborz A., McNally R., Swallow A. & Glendinning C. 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(1997) Prognosis for survival and improvement in function in children with severe developmental disabilities. Journal of Pediatrics 131, 712 – 17.</bibtext> </blist> <blist> <bibtext> World Health Organization (1977) Manual of the International Statistical Classification of Diseases, Injuries, and Causes of Death: 9th Revision. WHO, Geneva, Switzerland.</bibtext> </blist> <blist> <bibtext> World Health Organization (1992) The International Statistical Classification of Diseases and Related Health Problems: 10th Revision. WHO, Geneva, Switzerland.</bibtext> </blist> <blist> <bibtext> Yip P. S., Bruno G., Tajima N., Seber G. A. F., Buckland S. T., Corman R. M., Unwin N., Chang N. F., Fienberg S. E., Junker B. W., Laporte R. E., Libman I. M., McCarty D. J. & International Working Group for Disease Monitoring and Forecasting (1995) Capture‐recapture and multiple‐record systems estimation: history and theoretical development. American Journal of Epidemiology 142, 1047 – 58.</bibtext> </blist> <blist> <bibtext> Zipursky A., Poon A. & Doyle J. (1992) Leukemia in Down syndrome: a review. Pediatric Hematology and Oncology 9, 139 – 49.</bibtext> </blist> </ref> <aug> <p>By F. Tyrer; L. K. Smith and C. W. McGrother</p> <p>Reported by Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib21" firstref="ref3"></nolink> <nolink nlid="nl2" bibid="bib12" firstref="ref5"></nolink> <nolink nlid="nl3" bibid="bib11" firstref="ref8"></nolink> <nolink nlid="nl4" bibid="bib23" firstref="ref9"></nolink> <nolink nlid="nl5" bibid="bib20" firstref="ref10"></nolink> <nolink nlid="nl6" bibid="bib14" firstref="ref11"></nolink> <nolink nlid="nl7" bibid="bib17" firstref="ref12"></nolink> <nolink nlid="nl8" bibid="bib16" firstref="ref14"></nolink> <nolink nlid="nl9" bibid="bib27" firstref="ref19"></nolink> <nolink nlid="nl10" bibid="bib31" firstref="ref27"></nolink> <nolink nlid="nl11" bibid="bib30" firstref="ref31"></nolink> <nolink nlid="nl12" bibid="bib19" firstref="ref32"></nolink> <nolink nlid="nl13" bibid="bib26" firstref="ref33"></nolink> <nolink nlid="nl14" bibid="bib33" firstref="ref34"></nolink> <nolink nlid="nl15" bibid="bib10" firstref="ref35"></nolink> <nolink nlid="nl16" bibid="bib34" firstref="ref36"></nolink> <nolink nlid="nl17" bibid="bib13" firstref="ref37"></nolink> <nolink nlid="nl18" bibid="bib29" firstref="ref38"></nolink> <nolink nlid="nl19" bibid="bib25" firstref="ref40"></nolink> <nolink nlid="nl20" bibid="bib32" firstref="ref41"></nolink> <nolink nlid="nl21" bibid="bib24" firstref="ref55"></nolink> <nolink nlid="nl22" bibid="bib18" firstref="ref59"></nolink> <nolink nlid="nl23" bibid="bib35" firstref="ref61"></nolink> <nolink nlid="nl24" bibid="bib22" firstref="ref62"></nolink> <nolink nlid="nl25" bibid="bib15" firstref="ref63"></nolink> <nolink nlid="nl26" bibid="bib28" firstref="ref64"></nolink>
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  Data: Mortality in Adults with Moderate to Profound Intellectual Disability: A Population-Based Study
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  Data: English
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  Data: <searchLink fieldCode="AR" term="%22Tyrer%2C+F%2E%22">Tyrer, F.</searchLink><br /><searchLink fieldCode="AR" term="%22Smith%2C+L%2E+K%2E%22">Smith, L. K.</searchLink><br /><searchLink fieldCode="AR" term="%22McGrother%2C+C%2E+W%2E%22">McGrother, C. W.</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Intellectual+Disability+Research%22"><i>Journal of Intellectual Disability Research</i></searchLink>. Jul 2007 51(7):520-527.
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  Data: Blackwell Publishing. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8599; Fax: 781-388-8232; e-mail: customerservices@blackwellpublishing.com; Web site: http://www.blackwellpublishing.com/jnl_default.asp
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  Data: 8
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  Data: 2007
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  Data: Journal Articles<br />Reports - Research
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  Data: <searchLink fieldCode="DE" term="%22Urban+Areas%22">Urban Areas</searchLink><br /><searchLink fieldCode="DE" term="%22Place+of+Residence%22">Place of Residence</searchLink><br /><searchLink fieldCode="DE" term="%22Intervals%22">Intervals</searchLink><br /><searchLink fieldCode="DE" term="%22Females%22">Females</searchLink><br /><searchLink fieldCode="DE" term="%22Mortality+Rate%22">Mortality Rate</searchLink><br /><searchLink fieldCode="DE" term="%22Down+Syndrome%22">Down Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Comparative+Analysis%22">Comparative Analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Socioeconomic+Status%22">Socioeconomic Status</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22United+Kingdom%22">United Kingdom</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/j.1365-2788.2006.00918.x
– Name: ISSN
  Label: ISSN
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  Data: 0964-2633
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: People with intellectual disability (ID) experience a variety of health inequalities compared with the general population including higher mortality rates. This is the first UK population-based study to measure the extent of excess mortality in people with ID compared with the general population. Method: Indirectly standardized all-cause and disease mortality ratios (SMRs) and exact Poisson confidence intervals were calculated by age and sex for all adults, aged 20 years or over, with moderate to profound ID living in Leicestershire and Rutland, UK, between 1993 and 2005. The general population of Leicestershire and Rutland, which has a population of approximately 700 000 individuals in this age range, was used for comparison. To explore differences within the study population, overall SMRs were also calculated by presence of Down syndrome and last place of residence (city or county). Results: Of 2436 adults identified, 409 (17%) died during 23 000 person-years of follow-up. Both all-cause and disease-specific mortality were around three times higher than the general population but varied considerably with age. The largest differences were observed in people in their twenties, where all-cause mortality was almost nine times higher in men (SMR = 883; 95% CI = 560-1325) and more than 17 times higher in women (SMR = 1722; 95% CI = 964-2840). At a particular disadvantage were people with Down syndrome and women with ID living in the city. Conclusions: The relatively high SMRs observed in young people and in women, particularly those living in inner city areas and with Down syndrome, deserve further investigation for possible explanations, including socio-economic factors.
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  Data: 2007
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  Data: EJ764991
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        Value: 10.1111/j.1365-2788.2006.00918.x
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      – Text: English
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      – SubjectFull: Intervals
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      – SubjectFull: Down Syndrome
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      – TitleFull: Mortality in Adults with Moderate to Profound Intellectual Disability: A Population-Based Study
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