How people with learning disabilities die. Gyles Glover and Muhammad Ayub

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1 How people with learning disabilities die Gyles Glover and Muhammad Ayub

2 How people with learning disabilities die Gyles Glover Muhammad Ayub IHAL

3 About the authors Gyles Glover is a co-director of the Improving Health and Lives Learning Disabilities Observatory. He is a consultant in Public Health at Tees, Esk and Wear Valleys NHS Foundation Trust, based at the North East Public Health Observatory. He is Professor of Public Mental Health at the University of Durham Muhammad Ayub is a consultant psychiatrist at Tees, Esk and Wear Valleys NHS Foundation Trust specialising in learning disabilities. Acknowlegements: The authors are grateful to Stewart Einfeld of the University of Sydney and to our colleague Eric Emerson for their assistance with this work.

4 Contents Summary... 1 Introduction... 2 Background... 2 What is a death certificate?... 2 Has anyone done this before?... 2 How we worked... 5 What we found... 7 Overall numbers... 7 How complete were our figures?... 9 Do the numbers vary around the country? How old were people when they died? What did people with learning disabilities die from? Underlying causes of death Standardised Mortality Odds Ratios (SMORs) Particular causes of death Solids and liquids in the windpipe and lungs Epilepsy and convulsions Pneumonia Conclusions References Appendix table 1. Full listing of conditions associated with learning disabilities screened with numbers of deaths Appendix table 2. The five most common immediate causes of death, for each of the learning disability groups... 45

5 Summary Using information from death certificates we studied the ages and causes of death for people with learning disabilities, or conditions which can cause learning disabilities, who died in England between 2004 and Other studies have shown that only about four out of ten death certificates for people with learning disabilities record this problem. Numerically, our figures were roughly in line with this, but we found some causes of learning disabilities, for example Down s syndrome were better reported than others. Fragile-X syndrome and autistic spectrum conditions were particularly poorly reported. Age at death All groups with definite or possible learning disabilities died younger than people without. People with learning disabilities, but no physical condition reported as a cause lived longest but the age by which half of these had died was 15 years younger than for people without learning disabilities. People with Down s syndrome commonly die in their fifties and sixties, and people with hydrocephalus / spina bifida in their thirties and forties. Causes of death When we looked at what people died of, many well know associations (like Down s syndrome with thyroid or hole-in-the-heart problems) were clear. Two, possibly preventable causes stood out as particularly important because they were common and affected most groups of people with learning disabilities. They were lung problems caused by solids or liquids going down the wrong way (14% of deaths where a condition associated with learning disabilities was reported), and epilepsy or convulsions (13%). Just over 5% of people with hydrocephalus / spina-bifida died with pressure sores; in three quarters of cases this had led to an infection of the blood. Services looking after people with learning disabilities should pay particular attention to these problems. 1

6 Introduction The Learning Disabilities Observatory (IHaL) was set up as a result of the Inquiry into the deaths of six people with learning disabilities. A big part of our job is to investigate the health of, and health care health for people with learning disabilities, using things that are counted in official or NHS statistics. The earliest health statistics were counts of the ways people died. So this is an obvious and important subject for an early report. For this report we looked at death certificates, the official records of all deaths that happened in England between 2004 and 2008, the most recent five years for which data were available at the time we started our work. We asked three questions: 1. How many people could we tell had learning disabilities from their death certificates? 2. Compared to other people, how old were they when they died? and 3. What did they die of? The point of this work was to ask: 1. Are there are any causes of death that are particularly important for any groups of people with learning disabilities? and 2. Could we count these regularly in any way to see whether things are getting better or worse and whether they are better or worse in some places than others? Background What is a death certificate? When a person dies, a doctor who has been looking after them has to fill in a special form saying when they died and what they died of. Their relatives take this to the Registrar at the Town Hall and give some more details including where they lived, and how old they were. The Registrar then gives them a Death Certificate which proves the person is dead and gives the causes. Has anyone done this before? We couldn t find any reports, based on death certificate data for the whole of England, that were mainly about how people with learning disabilities die. We found two research studies about deaths of people on local learning disability case registers in England that looked at their death certificates. 2

7 Central London Professor Sheila Hollins and her colleagues looked at all the people on registers of learning disability service users in two parts of central London, who died between 1982 to They looked at their death certificates but were also able to use other information about them from the registers. 2 Out of just over 2,000 people on the registers, 270 (13.3%) died in the period. Learning disability, or a cause of it, was mentioned on the death certificates of just under half of those who died. Overall death rates were 10 times higher than the local population in one area and 18 times higher in the other. People with learning disabilities died at much younger ages, more than half before age 65. The commonest cause of death was pneumonia. This was the immediate cause of death for 45% of people. Epilepsy was recorded on the death certificate for 27%. People with cerebral palsy, incontinence, mobility problems and people who lived in hospital died younger. Leicestershire Dr Freya Tyrer and Dr Cath McGrother worked with the learning disability service user register for Leicestershire. 1 They looked at the causes of death, and the death certificates for the 503 people on the register who died between 2003 and Just under half (41%) of the death certificates said that the person had a learning disability or a condition that might cause this. Just under half (45%) the people for whom there was some mention had Down s syndrome. Learning disabilities or developmental disorders were mentioned in 30 cases (6%). The most common causes of death were respiratory diseases: 131 deaths (26%), five times more common than in the general population, and heart or circulatory diseases: 123 deaths (24%) just under twice (1.75 times) as common as in the general population. We found one study of deaths of people with Down s syndrome, from America, that used only death certificates. This was particularly interesting as the authors had exactly the same type of data we did. Studies of patterns of death in groups of people usually depend on knowing how many people there are in the group overall as well as how many of them die. Sheila Hollins and Freya Tyrer knew this from the case registers they used. But for people with learning disabilities, this method can only be used for small areas with case registers. This means the numbers of deaths that can be studied are also quite small. Quanhe Yang studied the whole of the United States over fifteen years. 3

8 People with Down s Syndrome in the United States of America Quanhe Yang and his colleagues in the United States used just death certificates to see whether there had been changes in the life expectancy of people with Down s syndrome. First they looked at the ages people died. The mid-point in the ages at which people died (called the median age at death) was 25 in 1983, but had nearly doubled to 49 by Death certificates for people with Down s syndrome were more likely include heart defects, dementia, thyroid deficiency and leukaemia as causes than certificates for other people. Almost all other types of cancer were mentioned less commonly. They used a method called Standardised Mortality Odds Ratios (SMORs). We use both of these methods in this study. 6 4

9 How we worked Death certificates can show that the person had learning disabilities in two ways. They can simply say they did, or they can say they had a condition, like Down s syndrome, that causes learning disabilities. Down s syndrome nearly always causes learning disabilities. Some other conditions, like cerebral palsy, often do, but not always. We started by making a list of all the conditions that can cause learning disabilities. Then we divided these into those that usually cause learning disabilities, those that sometimes do (more than 1 in 7-15%), those that only rarely do (less than 1 in 7 15%), and degenerative conditions causing learning disabilities and inevitable early death. For common conditions research studies tell us how many people with the conditions are affected this way, but for rare conditions there is less information. We compared our list to a similar list made by researchers at the NHS Information Centre for looking at care by GPs, 15 and we asked two experts to advise us. Our full list is shown in Appendix Table 1. We obtained the computerised file of records of all the deaths in England from 2004 to 2008 from the Office for National Statistics. This gives peoples sex, dates of birth and death, age at death, up to eight causes for their death and says where they normally lived. We started by looking at how many people who died had each condition on our list. We decided that for it would be possible to report individually on conditions where 100 or more people had died. We grouped other people on the basis of whether their condition usually, sometimes or rarely causes learning disabilities, or is a degenerative condition. We looked at two further groups, those where the death certificate said they had learning disabilities but gave no condition causing it, and all the rest where there was no evidence of learning disabilities. 5

10 Statistics We did the analysis using Microsoft Access, Excel and STATA v10. We drew the maps using Arc-Info. Because we did not have accurate figures for the population in each of the groups with learning disabilities we studied, we analysed the proportion of deaths from different causes. We compared these using standardised mortality odds ratios (SMORs), an approximation of the Standardised Mortality Ratio designed for use with this type of data. 6 We explain this technique alongside the findings from it. We calculated confidence intervals for proportions using the Wilson method (which is appropriate for the types of very small proportion characteristic of this type of data). Confidence intervals for SMORs were calculated using Byar s method for confidence intervals for individual numerical observations, as recommended in the APHO guide to statistical methods for epidemiological data. 9 We tested differences in distributional patterns using Chi Square tests. 6

11 What we found Numbers of deaths: All Deaths in England, 2004 to 2008 : 2,362,095 Deaths of people with: Degenerative conditions causing learning disabilities: 367 Down s syndrome: 2,163 Cerebral Palsy: 1,868* Hydrocephalus / Spina bifida: 523* Neurofibromatosis: 234* Microcephaly: 154* Deaths of people with other conditions: Usually associated with learning disabilities: 618 Sometimes associated with learning disabilities: 420* Rarely associated with learning disabilities: 246* Deaths of people with Learning disability but no associated condition: 887 * Only some of these people will have had learning disabilities Overall numbers The headline box above shows the total number of deaths in the five years and the numbers of people who died in the groups we can report on. 984 death certificates stated that the person had learning disabilities, but many more said the person had a condition which either can or usually does cause this. Five specific conditions were reported for at least a hundred people who died. One of these, Down s syndrome, is nearly always associated with learning disabilities. The numbers with each one of the conditions we looked at are shown in Appendix Table 1 Table 1, on the next page, shows the numbers and the numbers per thousand deaths. For each condition it shows how often the death certificate also said the person had learning disabilities. This shows that generally when a condition, like Down s syndrome is reported, the certifying doctor will not also say the person had learning disabilities, and when learning disabilities is reported as such, usually no condition causing it is reported. 7

12 Table 1. Overall numbers of deaths with conditions associated with learning disabilities (LD), and numbers and proportions reported as having learning disabilities (LD). Condition Deaths Per 100k deaths Number of these identified as having learning disabilities Degenerative conditions associated with LD Down's Syndrome Cerebral palsy Hydrocephalus / Spina bifida Neurofibromatosis Microcephaly More than one of these conditions Other conditions usually associated with LD Other conditions sometimes associated with LD Other conditions rarely associated with LD No medical condition associated with LD 2,355,546 99, All deaths 2,362,095 8

13 How complete were our figures? We wanted to know how close the death certificates we identified came to the number of people we know are likely to have had learning disabilities from other sources. The box shows how we did this. This suggested that overall, a total of 5,430 of the people whose death certificates we knew about had learning disabilities. This is 2.3 per This is about half of the most recent estimate of the number of adults who have learning disabilities at any time from General Practitioner records, 16 or that Eric Emerson and Chris Hatton estimated are likely to have severe or profound learning disability. 17 It is about one tenth of the number children identified as having moderate or more severe learning disabilities from the latest school census. These estimates are also similar to the findings of Sheila Hollins and by Freya Tyrer. Both of them found that less than half of the people with learning disabilities they knew had died, had their learning disability, or the condition causing it reported on their death certificate. How we estimated the total number of people with learning disabilities in the death statistics. We made a rough estimate of the number of people these figures suggested actually had learning disabilities. This was based on research studies where we could find them and expert opinion where we could not. We assumed that everyone with the degenerative conditions, Down s syndrome, the other conditions usually associated, or whose death certificates stated they did, had learning disabilities. In addition to this we estimated that 44% of people with cerebral palsy, 4 38% of people with hydrocephalus / spina-bifida, 5 8.5% of people with neurofibromatosis, 8 90% of people with microcephaly, 50% of those with conditions sometimes associated and 5% of those with conditions rarely associated also did. Where people had more than one condition we combined the probabilities. But these estimates are not exactly comparable as they take snapshots of the number alive at a point in time. Our figures will give more prominence to conditions where people die young and less to conditions where people reach older ages. So we looked in more detail at conditions where we had better evidence. Where possible we compared the numbers of individuals we could identify with studies of how many children born have each of the various conditions. This is a more appropriate comparison. Chart 1 shows how many deaths per 100,000 were reported as having each condition, and the estimated number we would expect based on research studies. The text box below gives details of the research studies we used. Down s syndrome and Hydrocephalus were reported about half as often as we would expect, cerebral palsy and neurofibromatosis rather less than this. Of the rarer conditions, Rett s syndrome reports appeared to be well reported, but numbers of deaths with Pattau s or 9

14 Edwards syndromes were under one fifth of those expected. Autism and Fragile X syndrome were particularly poorly reported. Chart 1. Comparing reported and expected deaths per 100,000 population for the more common conditions. Cerebral palsy (79/210) Down's syndrome (92/150) Autism (1.7/130) Hydrocephalus / Spina bifida Neurofibromatosis (10/39.9) Edwards' syndrome (4/21.5) Patau syndrome (2/13) Fragile X syndrome (0.5/10) Rett's syndrome (2/2.5) Reported Expected Deaths per 100,000 10

15 How we estimated the expected number of death with each condition Down s Syndrome: Found 92 per 100k deaths - expected 150. Principal estimate from a statistical model based on seven English registers (15 years) and two Australian regional registers (23 years), to 2003/4. 3 Adjusted down (from 170) on the basis of a study reviewing studies of 10 year survival for infants born with Down s Syndrome; this rose from 50% in the 1950s and 1960s to 80% in 1990s, suggesting smaller proportions of earlier birth cohorts would have survived childhood. Cerebral Palsy: Found 79 per 100k deaths - expected 210. Study based on registers covering births in six English counties and Scotland, 1984 to Hydrocephalus / Spina-bifida: Found 22 per 100k deaths - expected 45. The incidence of infantile hydrocephalus was reported as 53 per 100k in Sweden from 1967 to English congenital anomaly registers show, for the South West an average of 33 per 100k live births between 2002 and 2008; register for the North East and Cumbria and for Oxfordshire, Berkshire and Buckinghamshire show comparable figures. 7 Neurofibromatosis: Found 10 per 100k deaths - expected 40 for types 1 and 2 neurofibromatosis combined. Manchester study based on North West Family Genetic Register and North West Cancer Intelligence Service between 1974 and Fragile X syndrome: Found 0.5 per 100k deaths expected Autism spectrum conditions: Found 1.7 per 100k deaths expected Rare conditions usually causing learning disabilities Patau s syndrome Found 2 per 100k deaths expected 13 and Edwards syndrome found 4 per 100k deaths expected 21.5 (statistical model based on seven English registers (15 years) and two Australian regional registers (23 years), to 2003/4 3 Rett s syndrome Found 2 per 100k total deaths expected 5 per 100k girls, suggesting an overall prevalence in this the childhood age groups of 2.5 per 100k total. 11

16 Do the numbers vary around the country? The next set of charts (chart 2) show how the numbers of deaths varied around England. We used the ten large NHS administrative zones - Strategic Health Authority areas. The charts show, for each strategic health authority area, the number (per 100,000 deaths) of people who died in the four largest of our categories. Chart 2. Variations in rates for conditions between Strategic Health Authorities Down's Syndrome Cerebral Palsy North East (151) North West (297) York./ Humb. (236) E. Midlands (189) W. Midlands (229) E. of England (242) London (222) S.E. Coast (221) S. Central (151) South West (225) North East (123) North West (313) York./ Humb. (203) E. Midlands (162) W. Midlands (204) E. of England (180) London (221) S.E. Coast (163) S. Central (124) South West (175) Deaths per 100, Deaths per 100,000 Hydrocephalus/ Spina-bifida Other usually associated with LD North East (21) North West (84) York./ Humb. (55) E. Midlands (34) W. Midlands (72) E. of England (59) London (55) S.E. Coast (48) S. Central (38) South West (57) North East (92) North West (213) York./ Humb. (184) E. Midlands (115) W. Midlands (185) E. of England (182) London (145) S.E. Coast (143) S. Central (108) South West (155) Deaths per 100, Deaths per 100,000 Learning disability stated on certificate North East (65) North West (131) York./ Humb. (113) E. Midlands (87) W. Midlands (131) E. of England (130) London (59) S.E. Coast (98) S. Central (57) South West (113) Deaths per 100,000 The charts show how the exact numbers, per 100,000 deaths, vary around the country (the yellow bars). However, in most cases the actual numbers of deaths are fairly small and often the differences were no more than could occur on the basis of random fluctuation. To show 12

17 where the differences are reliable and where they are not, the charts also include grey bars on each column. These are called confidence intervals and they show the range within which we can be confident the true figure lies. Where these don t overlap for two areas, we can be confident they are really different. Confidence intervals are explained in the box. Confidence Intervals We have looked at the numbers of people who died with various conditions in the five year from 2004 to If we had started a year earlier, or a year later, the numbers would probably have been similar but not exactly the same. If two places had 80 and 100 deaths in our figures, one or two more or less deaths in either place would not make much difference to the conclusions. But if one had 8 deaths and the other 10, then while our figures would show the same pattern of one greater than the other, one more death in one place and one fewer in the other would make them equal. Two more and less would change the order. Statistical confidence intervals are worked out to take the overall size of the numbers into account. They show the range within which we could be confident, 19 times out of 20, that the next, or previous set of observations would lie assuming nothing is changing. 13

18 How old were people when they died? Ages by which half of deaths occurred People with specific conditions: Down s syndrome 56 Cerebral palsy 35 Hydrocephalus / spina bifida 38 Microcephaly 10 Neurofibromatosis 53 People with other conditions associated with learning disabilities Other conditions usually causing learning disabilities 8 People with conditions sometimes causing learning disabilities 23 People with conditions rarely causing learning disabilities 50 People with degenerative conditions 12 People with learning disabilities but no specified condition 65 People with no learning disabilities 80 People who have learning disabilities die at younger ages than people who do not. The easiest way to show this is to identify the age by which a proportion of deaths has occurred. The obvious proportion to choose is half. Half of the deaths of people who do not have a learning disability happen at or below the age of 80. As the headline box above shows, the longest lived of the groups with learning disabilities we studied was those who were reported to have learning disabilities but with no medical condition causing it specified. Half of their deaths happened by age 65. People with Down s syndrome had the next highest age at death, with half of deaths happening by the age of 56. Other groups died younger. Half of people with cerebral palsy or hydrocephalus / spina-bifida died by their mid thirties. People with microcephaly died particularly young. The table below gives two more sorts of detail. First it also shows the ages by which a quarter and three quarters of the deaths had occurred. This shows that deaths of people with Down s syndrome are much more closely bunched in age than deaths with some other conditions. Second, the table shows the confidence intervals for each figure. These show that the estimates are less precise where there are fewer deaths. 14

19 Table 2. Ages by which a quarter, half and three quarters of deaths had occurred, for people with learning disabilities or conditions associated with learning disabilities (LD), 2004 to Comparable ages for people without learning disabilities are shown in the bottom row. Condition group Deaths Quarter Half Three quarters Down's Syndrome 2, (48 to 50) 56 (56 to 57) 61 (61 to 61) Cerebral Palsy 1, (14 to 16) 35 (32 to 37) 58 (56 to 59) Hydrocephalus / spina bifida (23 to 31) 38 (37 to 40) 49 (46.1 to 53.9) Microcephaly (2 to 4) 10 (7 to 11) 28 (19.2 to 37.0) Neurofibromatosis (29.0 to 37.2) 53 (46.0 to 57.5) 71 (67.8 to 74.0) Others Usually associated with LD (2 to 3) 8 (6.0 to 10.9) 39 (33.7 to 44.0) Others Sometimes associated with LD (4 to 7) 23 (19 to 27) 41 (39 to 45) Others Rarely associated with LD (28.9 to 37.0) 50 (46.1 to 53.0) 67 (62 to 71) Degenerative conditions associated with LD (4 to 7) 12 (11 to 14) 28 (22.0 to 34.7) LD but no condition specified (50.0 to 53.8) 65 (63.8 to 66.0) 77 (75 to 78) No learning disability 2,354, (70 to 70) 80 (80 to 80) 87 (87 to 87) On the next two pages we show the pattern of ages at which people died in more detail. The lines on the graphs show the proportion of deaths that happen at each age-group or older, for each group of people with disabilities, and for those without. There are separate graphs for males and females. The thick black lines in the graphs show the pattern for people without learning disabilities. Very few of these die before the age of 30. After this the rate of death increases in each age group, but only a quarter of deaths happen below the age of 70. In the groups with disabilities, the line closest to this is for people with learning disabilities, but no condition causing it identified. However a quarter of deaths in this group have happened by age 52, and half by age 65. Only a little over one in twenty deaths for this group is at ages older than 84, compared with nearly a quarter of deaths for people who do not have learning disabilities. Two of the lines, for Down s syndrome and for hydrocephalus / spina-bifida, show a period of low death rates in young adult life, followed by a sharp turn, indicating a high proportion of deaths occurring at a particular age group. For Down s syndrome the age band is between 50 and 65; for people with hydrocephalus it is between 30 and 45. Deaths of people with neurofibromatosis, cerebral palsy and other conditions sometimes or rarely 15

20 associated with learning disabilities are spread more evenly across the age ranges. Deaths happen at much younger ages for people who have microcephaly, the degenerative conditions, the other conditions usually associated with learning disabilities or more than one of the specific conditions mentioned. The patterns are similar for males and females. 16

21 Percentage of deaths at age group or older Chart 3. Pattern of ages at death for males, grouped by whether or not they have learning disabilities or associated conditions 100% Males 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Degenerative conditions (207) Down's Syndrome (1,145) Cerebral palsy (1,046) Hydrocephalus / Spina bifida (217) Neurofibromatosis (109) Microcephaly (63) More than one of these conditions (24) Other conditions usually associated with LD (256) Other conditions sometimes associated with LD (217) Other conditions rarely associated with LD (114) LD but no condition specified (458) No learning disability (1,120,381) Age group 17

22 Percentage of deaths at age group or older Chart 4. Pattern of ages at death for females, grouped by whether or not they have learning disabilities or associated conditions 100% Females 90% 80% Degenerative conditions (169) Down's Syndrome (1,011) 70% 60% 50% 40% 30% 20% 10% 0% Cerebral palsy (784) Hydrocephalus / Spina bifida (279) Neurofibromatosis (116) Microcephaly (69) More than one of these conditions (26) Other conditions usually associated with LD (362) Other conditions sometimes associated with LD (203) Other conditions rarely associated with LD (132) LD but no condition specified (429) No learning disability (1,234,278) Age group 18

23 The charts on the following page show the age by which half have died, for each strategic health authority area, for the three most common groups. Even for the groups, where numbers are relatively large, any difference could be the result of random fluctuation. We have not presented this analysis for the groups with smaller numbers as it would not be reliable. We also looked at whether this value was changing over time. Only one of the conditions or condition groups we studied, hydrocephalus / spina-bifida, showed a significant trend. For people with this condition, the age by which half of the deaths had occurred, rose, in the five years, from 36 to

24 Chart 5. Age at death variation between strategic health authorities for common conditions Down's Syndrome Cerebral Palsy North East (151) North West (295) Yorkshire / Humber (236) East Midlands (188) West Midlands (229) East of England (242) London (220) South East Coast (220) South Central (150) South West (225) North East (121) North West (308) Yorkshire / Humber (197) East Midlands (159) West Midlands (200) East of England (173) London (219) South East Coast (159) South Central (124) South West (170) Median age at death Median age at death With LD but no condition specified North East (61) North West (124) Yorkshire / Humber (102) East Midlands (77) West Midlands (121) East of England (112) London (49) South East Coast (88) South Central (51) South West (102) Median age at death No learning disability North East (134,698) North West (351,906) Yorkshire / Humber (249,325) East Midlands (205,380) West Midlands (259,522) East of England (259,039) London (256,196) South East Coast (212,723) South Central (164,415) South West (261,321) Median age at death The median age at death is the age by which half the people in a group have died. 20

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