welcome! seminar series: international comparisons about mortality data in people with intellectual...
TRANSCRIPT
Welcome!
Seminar Series:
International comparisons about mortality data in people with intellectual disabilities
Seminar 1
• Welcome!
• Introduction to seminar series.• What do we know now about mortality of
people with intellectual disabilities (ID).
• Future seminar topics and dates.
Welcome!
• We are Pauline Heslop and Matt Hoghton (England) and Emily Lauer (USA) who have been involved in reviewing deaths of people with ID in our respective countries.
• We would love to know who you are and where you are from. Could you fill in the quiz to let us know please? Thank you!
Contributing to the webinar
Who has attended a webinar before? Can you let us know please by filling in the quiz?
To ask a question, please use the chat box in the bottom right hand corner of the screen.
The aim of the seminar series• To bring together academics, policy makers and
practitioners from different countries. • To share experiences of measuring, comparing and
using mortality data for people with ID.• To advance research into mortality of people with ID,
sufficient to allow us to make inferences at national and international levels.
• To support the development of practical initiatives/strategies to address common concerns identified by the data.
Key objectives• Agree a set of definitions and benchmarks to support
collection of internationally comparable data.• Share experiences about collecting mortality data,
including practical and ethical issues faced.• Provide a community of support for academics,
practitioners and policy-makers.• Support academics writing funding applications to
undertake work about mortality of people with ID.• Provide initial international comparisons about premature
mortality in people with ID, sufficient for the development of practical strategies to address this.
Plan for seminar seriesYear 1: Three webinars:
November 2014; March 2015; July 2015.
Year 2:Two webinars:
November 2015; March 2016.
Meeting in Australia to coincide with IASSID World Congress August 2016.
Year 3: Two webinars:
November 2016; March 2017.
Meeting in UK, USA or Europe July 2017.
Where are we now?
What do we know now about mortality of people with intellectual disabilities?
Definition of IDID is understood to refer to a state of:• significant limitations of cognitive (reasoning,
learning, problem solving) and adaptive (conceptually, socially and practically) functioning
• which affect areas of major life activity and the capacity to live independently as an adult
• which originated before the person reached adulthood (18 - 22 years of age)
• and which are likely to be life-long in nature.
Mortality of people with ID
• What do we know about age and cause of death of people with ID in the USA?
Emily Lauer will tell us.
Mortality of people with ID
• What do we know about age and cause of death of people with ID in Canada?
Hélène will tell us.
Mortality of people with ID
• What do we know about age and cause of death of people with ID in Australia?
Tony will tell us.
00 to 04
05 to 09
10 to 14
15 to 19
20 to 24
25 to 29
30 to 34
35 to 39
40 to 44
45 to 49
50 to 54
55 to 59
60 to 64
65 to 69
70 to 74
75 to 79
80 to 84
85 and
Over
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100
1,000
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100,000
ID CDRRest of NSW CDR
NSW Australia (June 2005 to December 2011)Crude Death Rate (CDR) per 100,000 by Age GroupIntellectual Disability (ID) compared to Rest of NSW Population
ID NSW Population minus IDDeaths PersonYears ID CDR Deaths PersonYears Rest of NSW CDR
30 22,721 132 3,218 2,947,280 10941 34,363 119 189 2,861,978 751 33,850 151 181 2,931,186 660 36,868 163 878 3,016,500 2953 27,181 195 1,332 3,180,276 4249 18,772 261 1,582 3,248,061 4957 16,267 350 2,070 3,228,132 6444 15,952 276 2,832 3,328,298 8557 15,422 370 4,053 3,232,322 12582 14,628 561 6,322 3,274,088 19380 12,440 643 8,939 3,022,149 29696 10,040 956 12,248 2,746,962 44687 6,213 1,400 17,027 2,406,308 70860 3,099 1,936 21,349 1,861,378 1,14744 1,474 2,985 28,842 1,495,566 1,92927 741 3,645 42,612 1,253,523 3,39919 407 4,665 58,446 967,487 6,04116 211 7,588 117,647 817,434 14,392
953 270,649 352 329,767 45,818,928 720WHO Adjusted 590 WHO Adjusted 388
SMR 1.52
NSW Australia (June 2005 to December 2011)Crude Death Rate (CDR) per 100,000 by Age GroupIntellectual Disability (ID) compared to Rest of NSW Population
The Intellectual Disability Group is all persons (n = 42,219) of all ages, who received a service from NSW ADHC Disability Services (a State Government Agency) between June 1 2005 and Dec 2011 and had a formal diagnosis of Intellectual Disability (ID). This group accounts for 0.5% of the NSW population. The prevalence of ID in NSW is estimated to be 1.8%
The observation period for deaths was June 1 2005 till Dec 31 2011. There were 953 deaths.
NSW population Deaths and population counts data were obtained from the Australian Bureau of Statistics (ABS).
To create a comparison group, ID deaths and ID person years were subtracted from raw NSW counts.
00 to 04
05 to 09
10 to 14
15 to 19
20 to 24
25 to 29
30 to 34
35 to 39
40 to 44
45 to 49
50 to 54
55 to 59
60 to 64
65 to 69
70 to 74
75 to 79
80 to 84
85 and
Over
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100000
Female ID CDR
Female NSW CDR
Male ID CDR
Male NSW CDR
NSW Australia (June 2005 to December 2011)Crude Death Rate (CDR) per 100,000 by Age Group & SexIntellectual Disability (ID) compared to Rest of NSW Population
Female MaleIntellectual Disability (ID) NSW Population Minus ID Intellectual Disability (ID) NSW Population Minus ID
agegrp Deaths PersonYearsFemale ID CDR Deaths PersonYearsFemale NSW CDR Deaths PersonYearsMale ID CDR Deaths PersonYearsMale NSW CDR00 to 04 16 7433 215 1374 1437138 96 14 15288 92 1844 1510142 12205 to 09 19 11021 172 75 1398755 5 22 23342 94 114 1463223 810 to 14 24 12234 196 54 1431974 4 27 21615 125 127 1499213 815 to 19 26 14772 176 253 1469184 17 34 22097 154 625 1547315 4020 to 24 21 11533 182 352 1561572 23 32 15648 204 980 1618704 6125 to 29 16 8523 188 452 1616622 28 33 10249 322 1130 1631439 6930 to 34 27 7046 383 583 1625060 36 30 9222 325 1487 1603071 9335 to 39 21 7068 297 954 1682576 57 23 8884 259 1878 1645722 11440 to 44 30 6724 446 1450 1632164 89 27 8698 310 2603 1600158 16345 to 49 35 6549 534 2408 1652674 146 47 8079 582 3914 1621414 24150 to 54 32 5557 576 3380 1524660 222 48 6882 697 5559 1497490 37155 to 59 38 4229 899 4553 1381961 329 58 5811 998 7695 1365001 56460 to 64 30 2588 1159 6417 1204868 533 57 3624 1573 10610 1201441 88365 to 69 22 1376 1599 8068 942190 856 38 1724 2205 13281 919187 144570 to 74 20 750 2668 11361 777086 1462 24 725 3312 17481 718479 243375 to 79 8 391 2044 17860 679884 2627 19 349 5437 24752 573640 431580 to 84 7 224 3124 28222 564134 5003 12 183 6551 30224 403353 749385 and Over 8 140 5712 74022 546951 13534 8 71 11301 43625 270483 16129
400 108158 161838 23129453 553 162491 167929 22689475
NSW Australia (June 2005 to December 2011)Crude Death Rate (CDR) per 100,000 by Age Group & SexIntellectual Disability (ID) compared to Rest of NSW Population
Mortality of people with ID
• What do we know about age and cause of death of people with ID in Germany?
Friedrich will tell us.
18
Westphalia-Lippe(13.500 persons per year, residential institutions or group homes, for the
years 2007 to 2010)
Men (56 %) 45 years
Women (44 %) 46 years
Characteristics of the two samples from Germany Number, sex and mean age (Dieckmann & Metzler 2012)
Baden-Württemberg(11.000 persons per year, various living arrangements, for the years 2007 to
2010)
Men (57 %) 43 years
Women (43 %) 45 years
age range: 18 to 95 years
0,0
0,1
20 25 30 35 40 45 50 55 60 65 70 75 80 85
Mortality rates of the general female population in Germany in comparison to those of women with ID (Westphalia-Lippe resp. Baden-Wuerttemberg)
general population women W-L women B-W© KatHO NRW
20
Westphalia-Lippe (residential institutions, group homes)
Men 70,9 years
Women 72,8 years
Average life expectancy(based on the age-specific mortality rates)
Baden-Wuerttemberg (various living arrangements)
Men 65,3 years
Women 69,9 years
General population in Germany
Men 77,3 yearsWomen 82,5 years
Mortality of people with ID
• What do we know about age and cause of death of people with ID in Scandinavia?
Eva will tell us.
Studies in Sweden• Central Sweden – study of people with mostly severe ID
(n = 1478) born between 1959 and 1974. Cohort was followed up in 1975 and 2003. 27% had died compared to 2% in the general population (Gustavson et al. 2005).
• Northern Sweden - all individuals known in the region in 1985 (n = 1400) were followed for seven years. There was a 60% increased mortality in the group with ID (Forsgren 1996).
• All individuals in Sweden with Down syndrome who died between 1969 and 2003. Median age at death was almost 60 years. Age at death had increased 1.8 years per year during this period (Englund 2013).
Mortality of people with ID
• What do we know about age and cause of death of people with ID in England?
Matt will tell us.
Confidential Inquiry dataConfidential Inquiry into premature deaths of people with learning (intellectual) disabilities
Reviewed in depth: • All known deaths of people with learning disabilities• In a discrete geographical area of England with a general population of
1.7m• Deaths occurred between 1st June 2010 – 31st May 2012.• Total number of deaths:
233 adults with learning disabilities
14 children with learning disabilities.
The death rate was 16.2 per 1000 of the population who have learning disabilities, nearly twice the rate of 8.8 deaths per 1000 of the general population.
Age at death
• Median age at death for males was 65 years• Men with learning disabilities died on average 13
years earlier than men in the general • population of England.
• Median age at death for women was 63 years• Women with learning disabilities died on • average 20 years earlier than women in the
general population of England.
Age distribution at death
What are you thinking now?
• Fill in the quiz to let us know!
• Please type any comments you have to tell us what you think about the seminar format or content.
Next seminar
• March 2015
• Dr Nick Lennox, Director of the Queensland Centre for Intellectual and Developmental Disability, Australia
• Developing international benchmarks for comparable data.
Thank you for joining us!
Contact details:
Twitter hashtag #ID_mort
Website to follow!
We would like to thank the Economic and Social Research Council (ESRC) UK for their support in funding this seminar series.