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Cause-Specific Mortality and Death Certificate Reporting in Adults with Moderate to Profound Intellectual Disability

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Title: Cause-Specific Mortality and Death Certificate Reporting in Adults with Moderate to Profound Intellectual Disability
Language: English
Authors: Tyrer, F., McGrother, C.
Source: Journal of Intellectual Disability Research. Nov 2009 53(11):898-904.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Peer Reviewed: Y
Page Count: 7
Publication Date: 2009
Document Type: Journal Articles
Reports - Research
Descriptors: Intervals, Females, Dementia, Down Syndrome, Death, Anatomy, Foreign Countries, Human Body, Moderate Mental Retardation, Severe Mental Retardation, Severity (of Disability), Etiology, Adults, Age Differences, Gender Differences, Males, Mortality Rate, Mental Disorders, Diseases, Accidents, Prevention, Health Promotion
Geographic Terms: United Kingdom
DOI: 10.1111/j.1365-2788.2009.01201.x
ISSN: 0964-2633
Abstract: Background: The study of premature deaths in people with intellectual disability (ID) has become the focus of recent policy initiatives in England. This is the first UK population-based study to explore cause-specific mortality in adults with ID compared with the general population. Methods: Cause-specific standardised mortality ratios (SMRs) and exact 95% confidence intervals were calculated by age and sex for adults with moderate to profound ID living in the unitary authorities of Leicester, Leicestershire and Rutland, UK, between 1993 and 2006. Causes of death were also studied to determine how often ID and associated conditions, such as Down syndrome, were mentioned. Results: A total of 503 (17% of population) adults with ID died during the 14-year study period (30 144 person-years). Relatively high cause-specific mortality was seen for deaths caused by congenital abnormalities (SMR = 8560), diseases of the nervous system and sense organs (SMR = 1630), mental disorders (other than dementia) (SMR = 1141) and bronchopneumonia (SMR = 647). Excess deaths were also seen for diseases of the genitourinary system or digestive system, cerebrovascular disease, other respiratory infections, dementia (in men only), other circulatory system diseases (in women only) and accidental deaths (in women only). Two-fifths (n = 204; 41%) of deaths recorded in adults with ID mentioned ID or an associated condition as a contributing cause of death. Conclusions: Strategies to reduce inequalities in people with ID need to focus on decreasing mortality from potentially preventable causes, such as respiratory infections, circulatory system diseases and accidental deaths. The lack of mention of ID on death certificates highlights the importance of effective record linkage and ID reporting in health and social care settings to facilitate the government's confidential inquiry into causes of death in this population.
Abstractor: As Provided
Number of References: 24
Entry Date: 2009
Accession Number: EJ858892
Database: ERIC
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  Value: <anid>AN0044628414;eul01nov.09;2019Jun04.10:27;v2.2.500</anid> <title id="AN0044628414-1">Cause-specific mortality and death certificate reporting in adults with moderate to profound intellectual disability. </title> <p>Background  The study of premature deaths in people with intellectual disability (ID) has become the focus of recent policy initiatives in England. This is the first UK population‐based study to explore cause‐specific mortality in adults with ID compared with the general population. Methods  Cause‐specific standardised mortality ratios (SMRs) and exact 95% confidence intervals were calculated by age and sex for adults with moderate to profound ID living in the unitary authorities of Leicester, Leicestershire and Rutland, UK, between 1993 and 2006. Causes of death were also studied to determine how often ID and associated conditions, such as Down syndrome, were mentioned. Results  A total of 503 (17% of population) adults with ID died during the 14‐year study period (30 144 person‐years). Relatively high cause‐specific mortality was seen for deaths caused by congenital abnormalities (SMR = 8560), diseases of the nervous system and sense organs (SMR = 1630), mental disorders (other than dementia) (SMR = 1141) and bronchopneumonia (SMR = 647). Excess deaths were also seen for diseases of the genitourinary system or digestive system, cerebrovascular disease, other respiratory infections, dementia (in men only), other circulatory system diseases (in women only) and accidental deaths (in women only). Two‐fifths (n = 204; 41%) of deaths recorded in adults with ID mentioned ID or an associated condition as a contributing cause of death. Conclusions  Strategies to reduce inequalities in people with ID need to focus on decreasing mortality from potentially preventable causes, such as respiratory infections, circulatory system diseases and accidental deaths. The lack of mention of ID on death certificates highlights the importance of effective record linkage and ID reporting in health and social care settings to facilitate the government's confidential inquiry into causes of death in this population.</p> <p>Keywords: death certificates; health inequalities; standardised mortality ratios; causes of death</p> <p>Premature death in people with intellectual disability (ID) is a concern and has become the focus of recent policy initiatives in England ([<reflink idref="bib5" id="ref1">5</reflink>], [<reflink idref="bib6" id="ref2">6</reflink>], [<reflink idref="bib8" id="ref3">8</reflink>]). Excess deaths in this population have been attributed to a greater risk of dying from respiratory infections ([<reflink idref="bib11" id="ref4">11</reflink>]; [<reflink idref="bib18" id="ref5">18</reflink>]), neurological diseases ([<reflink idref="bib11" id="ref6">11</reflink>]), mental disorders ([<reflink idref="bib11" id="ref7">11</reflink>]), diseases of the circulatory system ([<reflink idref="bib11" id="ref8">11</reflink>]) and congenital malformations ([<reflink idref="bib11" id="ref9">11</reflink>]). Conversely, people with ID may be less likely to die from neoplasms and external causes ([<reflink idref="bib18" id="ref10">18</reflink>]).</p> <p>Standardised mortality ratios (SMRs) provide a useful way of assessing the extent of excess mortality in people with ID compared with the general population, because they quantify how many more deaths than expected (if the death rate in the general population were applied) are observed in the population of interest. A SMR of 1.0 (or 100 if displayed as a percentage), for example, denotes no difference in mortality between the population of interest and the general population, whereas a SMR of 2.0 denotes a twofold increase in the population of interest. Previous studies report elevated SMRs for all causes of death in people with ID, varying from 2.0 to 18.0 ([<reflink idref="bib11" id="ref11">11</reflink>]; [<reflink idref="bib13" id="ref12">13</reflink>]; [<reflink idref="bib4" id="ref13">4</reflink>]; [<reflink idref="bib10" id="ref14">10</reflink>]; [<reflink idref="bib20" id="ref15">20</reflink>]) depending on sample size and characteristics. However, to our knowledge, no population‐based studies have been carried out in the UK that investigate cause‐specific SMRs in the ID population. Studies of deaths from specific causes require large samples to reliably detect differences between the ID and general population. They also depend on effective death reporting or record linkage, as identifying people with ID from death certificates alone may not be possible ([<reflink idref="bib13" id="ref16">13</reflink>]). Nonetheless it is important to investigate specific causes of death in people with ID to determine whether the deaths are potentially preventable.</p> <p>The aim of the present study was to investigate cause‐specific mortality in adults with moderate to profound ID compared with the general population over a 14‐year period. A secondary aim of this study was to investigate the reporting of ID and associated conditions as contributing causes of death in this population.</p> <hd id="AN0044628414-2">Methods</hd> <p></p> <hd id="AN0044628414-3">Population</hd> <p>This study was carried out using the Leicestershire Learning Disability Register. Briefly, the register holds information on adults with ID living in the unitary authorities of Leicester city, Leicestershire and Rutland, UK ([<reflink idref="bib14" id="ref17">14</reflink>]), which has an adult (aged 20+) population size of approximately 700 000 ([<reflink idref="bib17" id="ref18">17</reflink>]). Eligibility criteria for the register are based on moderate, severe and profound ID ([<reflink idref="bib24" id="ref19">24</reflink>]) with adaptive behaviour problems ([<reflink idref="bib12" id="ref20">12</reflink>]) and the use of and/or probable need for some form of specialist service because of intellectual impairment. Severity of ID is derived from seven intelligence, adaptive functioning and dependency measures from home interviews with clients and carers, which have been validated against the Vineland scale ([<reflink idref="bib19" id="ref21">19</reflink>]; [<reflink idref="bib22" id="ref22">22</reflink>]). Although a significant proportion of adults on the register (around 20%) have mild ID (approximate IQ 50–69), it is recognised that they are not representative of adults with mild ID as a whole who generally do not come into contact with specialist service providers. For this reason, people with mild ID were not considered when reporting SMRs for this study.</p> <hd id="AN0044628414-4">Procedure</hd> <p>All adults with moderate to profound ID on the register who were aged 20 years or over and who died between 1 January 1993 and 31 December 2006 were identified using information coded from death certificates at the Office of National Statistics (ONS). Mortality data from ONS contains up to eight causes of death coded using the ICD‐9 and ICD‐10 classification system ([<reflink idref="bib23" id="ref23">23</reflink>], [<reflink idref="bib24" id="ref24">24</reflink>]), one of which is also identified as the 'underlying' cause of death. Person‐years (years of observation time per person) were calculated over the 14‐year study period for this population. Individuals who did not die and who were not lost to follow‐up were assumed to be alive on 31 December 2006. Corresponding person‐years for the general population were calculated using national statistics for Leicester city, Leicestershire and Rutland ([<reflink idref="bib16" id="ref25">16</reflink>]). Indirect SMRs adjusted for age group (10‐year bands) and exact Poisson confidence intervals by sex were calculated for each underlying cause of death. This method has been described in detail in a previous study of all‐cause mortality using the Leicestershire Learning Disability Register ([<reflink idref="bib20" id="ref26">20</reflink>]). Standardised mortality ratios were presented as a percentage to be consistent with this previous study.</p> <p>As well as the underlying cause of death, all contributing causes of death recorded in adults with moderate to profound ID were further studied to determine if they included ID or any associated conditions. We searched for congenital malformations or chromosomal abnormalities (including Down syndrome, Patau's syndrome and Edward syndrome); hereditary and degenerative diseases of the central nervous system; paralytic syndromes (including cerebral palsy and hemiplegia); mental retardation; pervasive developmental disorders; and disorders of psychological development (specific delays in development).</p> <hd id="AN0044628414-5">Results</hd> <p>The study population comprised 2995 adults (1740 males and 1255 females) with moderate to profound ID, of whom 503 (17%) died during the 14‐year study period (1993–2006; 30 144 person‐years). Over the same period, more than 126 000 deaths occurred in the general population (9 639 900 person‐years).</p> <hd id="AN0044628414-6">Underlying causes of death</hd> <p>Table 1 shows all‐cause and underlying cause‐specific SMRs for people with ID compared with the general population. Overall mortality was almost three times as high in adults with ID compared with the general population, and was more than twice as high in men and more than three times as high in women. We observed large differences in the underlying causes of death reported, in particular for deaths from congenital malformations (SMR = 8560), diseases of the nervous system and sense organs (SMR = 1630), respiratory infections (bronchopneumonia: SMR = 647 and other respiratory infections: SMR = 464), cerebrovascular disease (SMR = 240) and diseases of the genitourinary system (SMR = 603) and digestive system (SMR = 238).</p> <p>1 Standardised mortality ratio (SMR) by underlying cause of death in adults with intellectual disability: 1993–2006</p> <p> <ephtml> <table><thead valign="bottom"><tr><th /><th><bold>Males</bold></th><th><bold>Females</bold></th><th><bold>Overall</bold></th></tr><tr><th><bold>Obs</bold></th><th><bold>Exp</bold></th><th><bold>SMR% (95% CI)</bold></th><th><bold>Obs</bold></th><th><bold>Exp</bold></th><th><bold>SMR% (95% CI)</bold></th><th><bold>Obs</bold></th><th><bold>Exp</bold></th><th><bold>SMR% (95% CI)</bold></th></tr></thead><tbody valign="top"><tr><td>All causes</td><td>278</td><td>121.8</td><td>228 (202–256)</td><td>225</td><td>69.4</td><td>324 (283–369)</td><td>503</td><td>181.1</td><td>277 (253–303)</td></tr><tr><td>Malignant neoplasms (ICD‐9:140–208, 230–234; ICD‐10:C00‐D09)</td><td /><td /><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Breast</td><td>0</td><td>0.0</td><td>0 (0–18913)</td><td>6</td><td>4.3</td><td>138 (50–300)</td><td>6</td><td>5.4</td><td>111 (40–241)</td></tr><tr><td> Lung, bronchus, trachea</td><td>6</td><td>7.7</td><td>77 (28–169)</td><td>0</td><td>2.7</td><td>0 (0–135)</td><td>6</td><td>9.6</td><td>62 (22–136)</td></tr><tr><td> Digestive organs, peritoneum</td><td>9</td><td>9.7</td><td>92 (0–175)</td><td>2</td><td>4.6</td><td>43 (0–156)</td><td>11</td><td>13.6</td><td>80 (40–144)</td></tr><tr><td> Other</td><td>15</td><td>14.6</td><td>103 (57–169)</td><td>9</td><td>7.8</td><td>115 (52–219)</td><td>24</td><td>21.4</td><td>112 (71–167)</td></tr><tr><td>Circulatory system diseases (ICD‐9:390–459; ICD‐10:I00–I99)</td><td /><td /><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Cerebrovascular disease</td><td>21</td><td>8.7</td><td>241 (149–368)</td><td>18</td><td>7.3</td><td>245 (145–388)</td><td>39</td><td>16.2</td><td>240 (171–328)</td></tr><tr><td> Ischaemic heart disease</td><td>38</td><td>30.4</td><td>124 (88–171)</td><td>20</td><td>11.5</td><td>174 (106–269)</td><td>58</td><td>38.9</td><td>149 (113–192)</td></tr><tr><td> Other</td><td>13</td><td>8.9</td><td>146 (78–250)</td><td>13</td><td>5.9</td><td>218 (116–373)</td><td>26</td><td>14.6</td><td>178 (116–260)</td></tr><tr><td>Respiratory infections (ICD‐9:460–519; ICD‐10:J00–J70)</td><td /><td /><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Bronchopneumonia</td><td>36</td><td>5.6</td><td>646 (452–894)</td><td>30</td><td>13.0</td><td>229 (155–328)</td><td>66</td><td>10.2</td><td>647 (500–823)</td></tr><tr><td> Other</td><td>34</td><td>9.6</td><td>355 (246–496)</td><td>31</td><td>5.1</td><td>604 (410–858)</td><td>65</td><td>14.0</td><td>464 (358–591)</td></tr><tr><td>Digestive system diseases (ICD‐9:520–579; ICD‐10:K00–K93)</td><td>12</td><td>5.4</td><td>221 (114–386)</td><td>9</td><td>3.5</td><td>257 (117–488)</td><td>21</td><td>8.8</td><td>238 (147–364)</td></tr><tr><td>Genitourinary system diseases (ICD‐9:580–629; ICD‐10:N00–N99)</td><td>10</td><td>1.7</td><td>578 (277–1063)</td><td>8</td><td>1.3</td><td>622 (268–1226)</td><td>18</td><td>3.0</td><td>603 (357–953)</td></tr><tr><td>Nervous system/sense organs (ICD‐9:320–389; ICD‐10:G00–H95)</td><td>36</td><td>2.6</td><td>1369 (959–1896)</td><td>30</td><td>1.5</td><td>1 960 (1322–2798)</td><td>66</td><td>4.0</td><td>1630 (1261–2074)</td></tr><tr><td>Congenital malformations (ICD‐9:740–759)</td><td>23</td><td>0.3</td><td>7054 (4471–10 584)</td><td>23</td><td>0.2</td><td>10 590 (6713–15 891)</td><td>46</td><td>0.5</td><td>8560 (6267–11 418)</td></tr><tr><td>Mental disorders (ICD‐9:290–319; ICD‐10:F00–F98)</td><td /><td /><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Dementia</td><td>4</td><td>0.9</td><td>457 (124–1170)</td><td>1</td><td>1.1</td><td>88 (2–491)</td><td>5</td><td>2.3</td><td>214 (69–500)</td></tr><tr><td> Other</td><td>3</td><td>0.4</td><td>745 (153–2177)</td><td>4</td><td>0.2</td><td>1 805 (491–4622)</td><td>7</td><td>0.6</td><td>1141 (458–2350)</td></tr><tr><td>External causes (ICD‐9:E800–E969; ICD‐10:V01–Y89)</td><td /><td /><td /><td /><td /><td /><td /><td /><td /></tr><tr><td> Accidental death</td><td>9</td><td>4.9</td><td>183 (83–347)</td><td>6</td><td>1.5</td><td>410 (150–894)</td><td>15</td><td>7.7</td><td>195 (109–322)</td></tr><tr><td> Other</td><td>1</td><td>3.7</td><td>27 (0–150)</td><td>1</td><td>0.7</td><td>140 (3–784)</td><td>2</td><td>4.0</td><td>49 (6–180)</td></tr><tr><td>All other causes</td><td>8</td><td>6.6</td><td>183 (52–239)</td><td>14</td><td>5.4</td><td>258 (141–433)</td><td>22</td><td>6.2</td><td>355 (222–538)</td></tr></tbody></table> </ephtml> </p> <p>1 Obs, observed number of deaths; exp, expected number of deaths; CI, confidence interval.</p> <p>We also observed a number of differences between underlying causes of death reported in men and women with ID. Deaths from dementia were more common in men with ID (SMR = 457) but not women, whereas deaths from ischaemic heart disease, other diseases of the circulatory system and accidental deaths were more common in women with ID (SMR = 174, 218 and 410, respectively), but not men.</p> <p>Of interest, we found that mental disorders (other than dementia) were reported as the underlying cause of death more often in people with ID than the general population (SMR = 1141). Further investigation of the seven individuals who died from this cause revealed that four apparently died from 'mental retardation', two from 'developmental disorders of unspecified scholastic skills' and one from 'non‐organic psychoses'.</p> <hd id="AN0044628414-7">Contributing causes of death</hd> <p>Analysis of the contributing causes of death in adults with ID revealed that around two‐fifths (<emph>n</emph> = 204; 41%) made any reference to ID or an associated condition. Down syndrome was listed as a contributing cause of death in 18% (<emph>n</emph> = 91) of cases, paralytic syndrome in 11% (<emph>n</emph> = 55), hereditary and degenerative diseases of the central nervous system in 7% (<emph>n</emph> = 35), congenital or chromosomal abnormalities in 7% (<emph>n</emph> = 34), cerebral palsy in 4% (<emph>n</emph> = 22), mental retardation in 3% (<emph>n</emph> = 17), and disorders of psychological development in 3% (<emph>n</emph> = 13) of cases.</p> <hd id="AN0044628414-8">Discussion</hd> <p>This study reaffirms that adults with moderate to profound ID in the UK are at a greater risk of dying from a number of causes. Marked differences between the ID and general population were observed for the underlying causes of death congenital malformations and diseases of the nervous system or sense organs. People with ID were also more likely to die from respiratory infections, diseases of the genitourinary system and digestive system, cerebrovascular disease, mental disorders and accidental deaths.</p> <p>The cause‐specific SMRs yielded in this study are strikingly similar to those reported by [<reflink idref="bib11" id="ref27">11</reflink>]) in children and adults with ID living in Sweden. Consistent with our findings, the Swedish study also observed excess deaths from congenital malformations, diseases of the nervous system and sense organs, respiratory infections, circulatory diseases and mental disorders in the ID population compared with the general population. Whereas in Finland, [<reflink idref="bib18" id="ref28">18</reflink>]) observed comparatively fewer deaths from malignant neoplasms in the adult ID population, we found no differences in neoplasms between the ID and general population, and again, this is consistent with Forsgren's findings. The Finnish study also observed comparatively fewer deaths from external causes, whereas we found that these occurred <emph>more</emph> frequently in women with ID in our study compared with the general population.</p> <p>Around two‐fifths of deaths in adults with ID mentioned ID or an associated condition as a contributing cause of death, which raises two important issues with regard to death certificate reporting. First, there appears to be some inconsistency among physicians in how they interpret <emph>contributing</emph> causes of death. Death certificates are intended to record the immediate sequence leading to death and consequently ID and associated conditions are unlikely to be relevant because they simply predispose the individual to a fatal condition. That ID and associated conditions were reported as contributing to the death suggests that physicians deem these conditions to be relevant, but are unable to record them elsewhere. In this respect, the death certificate reporting system may be too rigid and there is potentially room for extending reporting to include chronic health conditions, as proposed by [<reflink idref="bib13" id="ref29">13</reflink>]). However, the <emph>underlying</emph> cause of death was attributed to ID for six individuals, when clearly it is not a specific mechanism of death. Contributing causes of death for these six individuals were non‐specific; four were defined as having 'senility', one 'malaise and fatigue'; and one 'other ill‐defined and unknown cause of death'.</p> <p>Our findings raise a second issue with regard to death certificate reporting. A substantial proportion of deaths in people with ID did not mention ID or associated conditions. Thus people with ID cannot be identified from death certificates alone, which has implications for current government initiatives. The Department of Health recently agreed to set up a confidential inquiry into premature deaths in people with ID ([<reflink idref="bib8" id="ref30">8</reflink>]) in response to recommendations made by Sir [<reflink idref="bib15" id="ref31">15</reflink>]). A study of a representative group of people with ID who have died is dependent on accurate reporting of ID in health and social care settings and effective data linkage with deaths databases. Such a study is unlikely to be able to report on those with mild ID because they are less identifiable in these settings.</p> <p>Our findings are based on a representative population of adults with moderate to profound ID. People with mild ID are not described in this study because those registered constitute a small and unrepresentative proportion of those with mild ID in the wider community. We have found that those with mild ID who are enrolled on the register often have significant adaptive and challenging behaviour problems that cannot be managed effectively by mainstream services and thus are referred for specialist care. Had those with mild ID been included in the numerator for this study, the reported SMRs are likely to have been lower, because the risk of premature death is greater in people at the more severe end of the ID spectrum ([<reflink idref="bib18" id="ref32">18</reflink>]; [<reflink idref="bib21" id="ref33">21</reflink>]). Another point for consideration is that adults only were investigated in this study. The inclusion of younger individuals is likely to have had the opposing effect of elevating the reported SMRs because children and adolescents with ID are at a greater risk of death than older individuals ([<reflink idref="bib11" id="ref34">11</reflink>]). Both these considerations do not detract from our finding that mortality from a substantial number of causes is greater in people with ID than the general population.</p> <p>While this study further highlights the health inequalities faced by people with severe ID, many would argue that such inequalities are inevitable as people with ID often have significant comorbidity, such as physical impairments, congenital heart malformations and mental disorders ([<reflink idref="bib1" id="ref35">1</reflink>]; [<reflink idref="bib3" id="ref36">3</reflink>]), which all incur a greater risk of death from the aforementioned causes. An important question that this study is unable to answer is how many deaths were <emph>unexpected</emph> in this group. Although people with ID are more likely to experience health problems, many go undetected in this population ([<reflink idref="bib2" id="ref37">2</reflink>]). Key barriers to equal treatment in people with ID include 'diagnostic overshadowing' (erroneously attributing presenting health problems to ID rather than to the underlying condition) ([<reflink idref="bib9" id="ref38">9</reflink>]) and lack of consideration among healthcare professionals for communication problems, difficulties in understanding and the complex health needs of people with ID ([<reflink idref="bib15" id="ref39">15</reflink>]). The government recently announced its commitment to providing annual health checks [initially proposed in 2001 ([<reflink idref="bib5" id="ref40">5</reflink>])] for people with ID ([<reflink idref="bib7" id="ref41">7</reflink>]) and we hope that these health checks go some way towards reducing health inequalities in this population. Our findings suggest that prevention strategies may need to focus on those areas where deaths are potentially avoidable, such as cardiovascular disease, diseases of the genitourinary system and digestive system and accidental deaths, and target people with ID who are most at risk, such as those with hypertension or obesity.</p> <hd id="AN0044628414-9">Acknowledgement</hd> <p>We gratefully acknowledge Peter Goldblatt at the Office of National Statistics for his advice on death reporting.</p> <ref id="AN0044628414-10"> <title> References </title> <blist> <bibl id="bib1" idref="ref35" type="bt">1</bibl> <bibtext> Alborz A., McNally R., Swallow A. & Glendinning C. (2003) From the cradle to the grave: a literature review of access to health care for people with learning disabilities across the lifespan. 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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Cause-Specific Mortality and Death Certificate Reporting in Adults with Moderate to Profound Intellectual Disability
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Tyrer%2C+F%2E%22">Tyrer, F.</searchLink><br /><searchLink fieldCode="AR" term="%22McGrother%2C+C%2E%22">McGrother, C.</searchLink>
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  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Intellectual+Disability+Research%22"><i>Journal of Intellectual Disability Research</i></searchLink>. Nov 2009 53(11):898-904.
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  Label: Availability
  Group: Avail
  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 7
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2009
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Intervals%22">Intervals</searchLink><br /><searchLink fieldCode="DE" term="%22Females%22">Females</searchLink><br /><searchLink fieldCode="DE" term="%22Dementia%22">Dementia</searchLink><br /><searchLink fieldCode="DE" term="%22Down+Syndrome%22">Down Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Death%22">Death</searchLink><br /><searchLink fieldCode="DE" term="%22Anatomy%22">Anatomy</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Human+Body%22">Human Body</searchLink><br /><searchLink fieldCode="DE" term="%22Moderate+Mental+Retardation%22">Moderate Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Severe+Mental+Retardation%22">Severe Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Severity+%28of+Disability%29%22">Severity (of Disability)</searchLink><br /><searchLink fieldCode="DE" term="%22Etiology%22">Etiology</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Age+Differences%22">Age Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Gender+Differences%22">Gender Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Males%22">Males</searchLink><br /><searchLink fieldCode="DE" term="%22Mortality+Rate%22">Mortality Rate</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Disorders%22">Mental Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Diseases%22">Diseases</searchLink><br /><searchLink fieldCode="DE" term="%22Accidents%22">Accidents</searchLink><br /><searchLink fieldCode="DE" term="%22Prevention%22">Prevention</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Promotion%22">Health Promotion</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.1365-2788.2009.01201.x
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 0964-2633
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: The study of premature deaths in people with intellectual disability (ID) has become the focus of recent policy initiatives in England. This is the first UK population-based study to explore cause-specific mortality in adults with ID compared with the general population. Methods: Cause-specific standardised mortality ratios (SMRs) and exact 95% confidence intervals were calculated by age and sex for adults with moderate to profound ID living in the unitary authorities of Leicester, Leicestershire and Rutland, UK, between 1993 and 2006. Causes of death were also studied to determine how often ID and associated conditions, such as Down syndrome, were mentioned. Results: A total of 503 (17% of population) adults with ID died during the 14-year study period (30 144 person-years). Relatively high cause-specific mortality was seen for deaths caused by congenital abnormalities (SMR = 8560), diseases of the nervous system and sense organs (SMR = 1630), mental disorders (other than dementia) (SMR = 1141) and bronchopneumonia (SMR = 647). Excess deaths were also seen for diseases of the genitourinary system or digestive system, cerebrovascular disease, other respiratory infections, dementia (in men only), other circulatory system diseases (in women only) and accidental deaths (in women only). Two-fifths (n = 204; 41%) of deaths recorded in adults with ID mentioned ID or an associated condition as a contributing cause of death. Conclusions: Strategies to reduce inequalities in people with ID need to focus on decreasing mortality from potentially preventable causes, such as respiratory infections, circulatory system diseases and accidental deaths. The lack of mention of ID on death certificates highlights the importance of effective record linkage and ID reporting in health and social care settings to facilitate the government's confidential inquiry into causes of death in this population.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: Ref
  Label: Number of References
  Group: RefInfo
  Data: 24
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2009
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ858892
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  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/j.1365-2788.2009.01201.x
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 7
        StartPage: 898
    Subjects:
      – SubjectFull: Intervals
        Type: general
      – SubjectFull: Females
        Type: general
      – SubjectFull: Dementia
        Type: general
      – SubjectFull: Down Syndrome
        Type: general
      – SubjectFull: Death
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      – SubjectFull: Anatomy
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      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Human Body
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      – SubjectFull: Moderate Mental Retardation
        Type: general
      – SubjectFull: Severe Mental Retardation
        Type: general
      – SubjectFull: Severity (of Disability)
        Type: general
      – SubjectFull: Etiology
        Type: general
      – SubjectFull: Adults
        Type: general
      – SubjectFull: Age Differences
        Type: general
      – SubjectFull: Gender Differences
        Type: general
      – SubjectFull: Males
        Type: general
      – SubjectFull: Mortality Rate
        Type: general
      – SubjectFull: Mental Disorders
        Type: general
      – SubjectFull: Diseases
        Type: general
      – SubjectFull: Accidents
        Type: general
      – SubjectFull: Prevention
        Type: general
      – SubjectFull: Health Promotion
        Type: general
      – SubjectFull: United Kingdom
        Type: general
    Titles:
      – TitleFull: Cause-Specific Mortality and Death Certificate Reporting in Adults with Moderate to Profound Intellectual Disability
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            NameFull: Tyrer, F.
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            NameFull: McGrother, C.
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