1. Mortality in people with intellectual disability in England 2010-2014: measures, causes and comparisons Gyles Glover, Rachael Williams, Pauline Heslop, Jessie Oyinola, Jillian Grey

2. Overview Background to study Methods Findings Implications and further work in the English context 2Statistical data on mortality

3. Background Previous English studies either: small scale – CIPOLD (Heslop et al), Leicestershire study (Tyrer, Smith, McGrother), London case registers study (Hollins et al) not population based (Glover and Ayub) Reason for population based studies Needed for standard epidemiological measures - age specific rats, SMRs, life expectancy Reasons for large scale - preferably 100% studies detail of causes variation between areas combination of reasonable confidence intervals with reasonably short timeframe 3Statistical data on mortality

4. Data linkage issues in England Good data are collected GPs keep registers of ‘learning disability’ in patients registered with them Could provide population data Death certificates available for whole country Problem is information governance objections to linkage General practice research registers Available since early 1990s Recently, one has been linked to death certification and hospitalisation data Study of this is an improvement but still not 100% population-based 4Statistical data on mortality

5. Methods General practice research register – Clinical Practice Research Datalink (CPRD) Data for 4 years – April 2010-March 2014 Patients divided into those with and without ID GP ID register (essentially diagnoses) other conditions dependably associated Data provided to us as tabulated counts. What I (in my naivety) requested - the least identifiable requirement Person days observation All deaths by ICD chapter cause Frequent causes and 4 most frequent chapters to 3 char ICD codes ‘Avoidable’ deaths (preventable / amenable) in definition groupings Tabulations were counts by 10 year age group, sex, region of GP practice, ethnic group, year of death, cause and ID status Analysis mostly in Access and Excel, Visual basic statistical routines and Public Health Observatory custom tools 5Statistical data on mortality

6. Findings All causes statistics Causes Avoidable deaths International comparisons 6Statistical data on mortality

7. Population and deaths 7Statistical data on mortality MeasureWith IDWithout ID PYER59,280 (average 14,820)11,163,190 (average 2,790,797) Deaths66497,371 Population pyramids

8. 8Statistical data on mortality MeasureWith IDWithout ID MaleFemaleMaleFemale Crude death rate 10.9 (9.9 to 12.1) 11.6 (10.3 to 13.0) 8.5 (8.4 to 8.5) 9.1 (9.0 to 9.1) SMR 3.0 (2.7 to 3.4) 3.4 (3.0 to 3.8) 1.0 (1.0 to 1.0) 1.0 (1.0 to 1.0) Life expectancy (life table method) 63.8 (57.7 to 69.9) 66.7 (63.4 to 70.0) 83.6 (83.4 to 83.7) 86.9 (86.8 to 87.0) All causes mortality measures

9. Age specific death rate ratios (rate with/without ID) 9Statistical data on mortality

10. Causes – proportional mortality 10Statistical data on mortality

11. Proportional mortality for age groups 11Statistical data on mortality

12. SMRs for ICD 10 chapters 12Statistical data on mortality ICD chapterDeathsSMR (95% CI) IX Diseases of the circulatory system 152 (22.9%)2.8 (2.4 to 3.3) X Diseases of the respiratory system 114 (17.2%)4.9 (4.1 to 5.9) II Neoplasms 87 (13.1%)1.1 (0.9 to 1.4) VI Diseases of the nervous system 85 (12.8%)9.8 (7.9 to 12.1) XVII Congenital malf. deform's & chromosomal abn's 56 (8.4%)72.9 (56.1 to 94.8) XI Diseases of the digestive system 52 (7.8%)4.0 (3.0 to 5.2) V Mental and behavioural disorders 43 (6.5%)5.4 (4.0 to 7.3) XX External causes of morbidity and mortality 25 (3.8%)2.0 (1.4 to 3.0) XIV Diseases of the genitourinary system 16 (2.4%)5.4 (3.3 to 8.8) IV Endocrine, nutritional and metabolic diseases 15 (2.3%)5.1 (3.0 to 8.4) I Infectious and parasitic diseases 7 (1.1%)3.2 (1.5 to 6.6) XVIII Symptoms, signs & other findings5 (0.8%)2.3 (0.9 to 5.5) XII Diseases of the skin and subcutaneous tissue *6.4 (2.4 to 17.1) XIII Musculoskeletal system /connective tissue diseases*2.1 (0.7 to 6.6) All causes664 (100.0%)3.2 (2.9 to 3.4)

13. Specific causes 1 Cardiovascular ischaemic heart disease (57 deaths, expected 26·4, SMR 2·2, 95% CI 1·6-2·8) cerebrovascular disease (39 deaths, expected 11·8, SMR 3·3, 95% CI 2·3-4·5) phlebitis and thrombophlebitis (10 deaths, expected 1.5, SMR 6.8, 95% CI 3.2-12.5) cardiomyopathy (9 deaths, expected 1.0, SMR 8.9, 95% CI 4.1-16.9) pulmonary embolism (6 deaths, expected 1.1, SMR 5.5, 95% CI 2.0-12.1) Respiratory influenza and pneumonia’ (57 deaths, expected 7·4, SMR 7·7, 95% CI 5·8-9·9) lung diseases due to external agents (24 deaths, expected 1·1, SMR 21·8, 95% CI 13·9-32·4) 13Statistical data on mortality

14. Specific causes 2 Neoplasms digestive organs (32 deaths, expected 20·8, SMR 1·5, 95% CI 1·1-2·2) colon and rectum (16 deaths, expected 6.8, SMR 2·4, 95% CI 1·3-3·8) female genital organs (9 deaths, expected 4.0, SMR 2.3, 95% CI 1.0-4.3) – roughly half uterine body and ovaries – greater excess due to uterine body breast – expected 6, slightly fewer but no significant difference Also: Dementia (33 deaths, expected 5·5, SMR 6·0, 95% CI 4·2-8·4) Epilepsy (26, expected 0·8, SMR 34·4, 95% CI 23·4-50·5) and ‘Unhelpful’ causes Down’s syndrome (28, 4.2% of deaths of people with ID) Cerebral palsy (23, 3.5%) 14Statistical data on mortality

15. Avoidable deaths ONS England figures for 2013: 23% of deaths avoidable, Our findings: Proportions of deaths ‘preventable’, ‘amenable’ and overall ‘avoidable’ 15Statistical data on mortality Category of deathsWith IDNo ID Preventable17.3 (14.6 to 20.4)17.7 (17.5 to 17.9) Amenable31.2 (27.8 to 34.8)9.9 (9.7 to 10.1) Overall avoidable41.0 (37.3 to 44.7)21.0 (20.7 to 21.3)

16. Avoidable mortality – 2 Age profile 16Statistical data on mortality 77% of deaths at ages 0 to 7430% of deaths at ages 0 to 74

17. Avoidable causes different People with ID congenital malformations, deform’s and chromosomal anomalies 19·0% of avoidable deaths, 24·1% of amenable deaths 44% of this group Down’s syndrome aged 45-74 - ? avoidable Other major amenable causes pneumonia, ischaemic heart disease epilepsy cerebrovascular disease Preventable DVT / PE 17Statistical data on mortality People without ID congenital malformations, deform’s and chromosomal anomalies 0.5% of avoidable deaths, 1% of amenable deaths Major preventable causes Younger than 45: suicide, accidents, alcohol related disorders older than 45, ischaemic heart disease, lung cancer, alcohol related diseases, COPD, breast cancer, strokes

18. International comparisons Data available from published reports providing sufficient information Age specific: deaths, population / years exposed to risk ID only Standardised to 2013 European standard population 18Statistical data on mortality LocationDatesComments Leicestershire1993-2005Register, incomplete age spectrum (age 20+) Finland1996-2007National social security linked to mortality (age 15+) Manitoba, Canada2000-2005 Established mortality / social security / health data warehouse (age 20+) Republic of Ireland2002-2012Register (age 20+) SE Ontario, Canada2004-2011Register (age 20+) England2010-2014Primary care data linked to mortality (age 18+) Massachusetts2012-2013State monitoring system

19. Directly standardised death rates, all causes 19Statistical data on mortality

20. Further work English NHS uses: National mortality target National data requested, First round will be incomplete and initial extraction flawed. However this is only anonymised data for areas. Continuing information governance issues in linking GP practice level registers to national datasets Significant new findings: Strokes Thrombotic events Further discussion needed on the classification of deaths amenable to medical care 20Statistical data on mortality