Professional Documents
Culture Documents
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pp –
(Chaney et al. ; Eyman et al. ; Strauss divided into six classes: normal intelligence, limited
et al. ) and fatal intestinal obstructions (Jancar intelligence, and mild, moderate, severe and pro-
& Speller ), and decreased mortality in cancer found ID (WHO ).
(Raitasuo et al. ). Intellectual disability is often All people with ID who were identified in
associated with epilepsy and cerebral palsy, as well and were alive on January formed the
as other neurological disorders and additional ill- present study population (n = ). The follow-up
nesses. The living environments of people with ID period consisted of the subsequent years until
differ from the general population, but these have December . Out of those individuals examined
been integrated over recent decades, a development with ID, % were identified in the records .
that has influenced cause-specific mortality. Life There were deaths (Table ), for which
expectancy has increased in line with the general death certificates (n = ) were obtained from
population (Walz et al. ), creating a new Statistics Finland, and then reviewed and coded.
ageing population with ID, whose impact on cause- Classification of death and inquest practices have
specific mortality in this group is now becoming remained the same throughout this period. Infor-
manifest. mation on the cause of death was restricted to the
The particular aims of the present study were to primary cause of death, which was the disorder,
determine the cause-specific mortality of males and disability or cause initiating the set of diseases
females with ID by age and at all levels of ID in leading to the immediate cause of death, and to the
comparison with the general population, and to immediate cause of death, which was the disease,
identify the most important causes. The authors set defect or disability according to signs of which the
out to provide the first cause-specific risk ratios for patient had died. Other conditions mentioned in
adults with ID. the death certificate were included in the original
data set as contributing causes of death. All these
causes of death were classified into categories
Methods according to the ninth revision of the International
Classification of Diseases, Injuries and Causes of Death
Population
(ICD-; WHO ).
The study group was comprised of individuals
included in a large, population-based study in
Statistical analysis
Finland (population = million) in . This was
a nation-wide, cross-sectional, multidisciplinary A total of person-years was calculated for
study undertaken to investigate the number of the men and women of the study population.
people with ID and their needs for services. The Individuals were classified by sex, quinquinneum of
study population of persons (.% of the their birth (e.g. – and –), IQ and
population) lived in municipalities, which repre- aetiology of ID. An indicator of relative mortality
sented Finland’s prevailing socio-economic struc- differences was obtained by calculating the age-
ture (Amnell et al. ). adjusted relative mortality rates of people with ID
In , municipal officials were asked to report compared with the general population. The present
all individuals suspected or known to have ID and authors also calculated the absolute differences
the National Board of Health organized examina- between the age-standardized death rates. The age-
tions of these people. The municipalities reported standardized cause-specific death rates were needed
individuals aged between and years, to calculate the absolute mortality differences, and
of whom were examined and found to have the share of each cause of death in the total excess
ID. In addition, persons were diagnosed with ID mortality of persons with ID was derived by indi-
by case records only. The prevalence of ID in the rect age standardization using -year age groups. In
study was .%. In , the definition of IQ level order to compare the mortality of different diseases,
included five classes: normal intelligence, limited Cox’s proportional hazard models were used to
intelligence, and mild, moderate and profound ID quantify the differences between groups (Cox )
(WHO ). In the present study, IQ levels were using the SPSS . software package.
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32
K. Patja et al. • Cause-specific mortality
Table 1 Distribution of the study population at time of death by age, sex and level of intellectual disability (ID)
Level of ID
2–9 – – 4 3 – 1 – 1 – 1 10
10–19 – – 17 6 1 3 4 2 5 2 40
20–29 – – 19 10 3 6 10 7 11 7 73
30–39 – – 18 18 5 6 6 10 15 6 84
40–49 – 1 18 14 7 7 8 18 24 21 118
50–59 – – 15 11 19 13 23 35 38 37 191
60–69 2 2 19 14 7 16 37 54 68 56 275
70–79 1 2 6 3 11 14 29 48 57 57 228
>80 – – 1 4 5 4 12 23 19 24 92
Total 3 5 117 83 58 70 129 198 237 211 1111
Study approval relative disease mortality excess was larger for men
than women, but not thereafter. Men with ID were
The present study was approved by the Ministry of
at the highest risk of dying of disease in their first
Social Affairs and Health, and the Ministry of Edu-
decades (Table ), but at the same time, their risk
cation. The Data Protection Ombudsman approved
of accident was only one tenth that of the general
the data protection and linking the original material
population (Table ). Ageing increased the accident
with national databases.
risk for both sexes, particularly for women
(Table ).
Results
Cause-specific mortality
There was a wide distribution in age at time of
death (Table ) and causes of death (Table ). The Although vascular diseases formed the largest group
mean follow-up time until death was . years of primary causes of death – a total of one-third
(SD = .). The mean age of women and men at (Table ) – these were less common than in the
death was . and . years, respectively. Overall, sex- and age-matched general population. The rela-
mean age at death was . years for mild ID, tive risk was lower for men in all groups and for
. years for moderate ID, . for severe ID and most women except those with mild or moderate
. years for profound ID. ID aged between and years. In the younger
age group, congestive heart failure, aortic aneurysm
and cardiomyopathy were the most common causes
Mortality from all causes of death
of cardiac death, and were often associated with
Excess mortality was observed in several categories: malformations like Down’s syndrome and congeni-
respiratory diseases, digestive diseases and infec- tal malformations. Among the vascular diseases,
tious diseases, but it was cut down by ageing acute cardiac infarct was the cause of death in %
(Table ). There was excess disease mortality of of cases, cerebral infarct or bleeding in %, con-
people with ID < years of age compared with genital heart disease in % and pulmonary infarct
the general population, but not in later years in % of cases. Mean age at death as a result of
(Table ). In age groups younger than years, the cardiovascular diseases was . years.
© Blackwell Science Ltd, Journal of Intellectual Disability Research , –
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K. Patja et al. • Cause-specific mortality
Table 2 Distribution of all causes of death (i.e. primary, immediate and contributing) in the study population (n = )
Cause of death
Table 3 Risk of death from disease among people with intellectual disability (ID) by level of ID and age (adjusted risk ratios; . = similar
risk as the general population)
Respiratory diseases were the second largest % had profound ID, % severe ID, % moder-
group (Table ). Pneumonia was the primary cause ate ID and % mild ID. Eleven people died of
of death in % and chronic obstructive pulmonary lung tuberculosis during the study period. The risk
disease (COPD) in %. Out of pneumonia deaths, ratio of respiratory diseases for persons with mild
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K. Patja et al. • Cause-specific mortality
Table 4 Risk of accidental death among people with intellectual disability (ID) by level of ID and age (adjusted risk ratios; . = similar risk
as the general population)
ID was . times higher, and for persons with pro- age = . years) than in other disease groups at all
found ID, it was . times higher than in the levels of ID. The mean age at death from epilepsy
general population. Overall, men were at higher risk was . years and there was no significant varia-
than women in younger age groups (< years), tion by levels or sex.
but at lower risk from years of age onwards Eighty people (.%) died in accidental or
(Table ). The mean age at death from respiratory violent circumstances; there was no difference in
diseases was . years. frequency between men and women. The risk of
Cancer was the third largest group, but the rela- accident was lower for those < years than in
tive risk of cancer was significantly lower at all the general population, even when occupational
levels of ID and in all age groups (Tables & ). and traffic accidents were considered (Table ).
Out of all neoplasms, % were digestive, % res- Among the elderly, women had an increased
piratory and % urogenital. Out of all causes of risk of fatal fracture compared to the general popu-
death, cancer accounted for % of deaths in sub- lation, while men’s increased risk of external cause
jects with profound ID, % in moderate ID and of death was caused by the higher suicide rate.
% in subjects with mild ID. The mean age at Overall, there were three homicides, seven unsolved
death was . years. A detailed analysis of neo- causes, suicides and accidents. Out of the
plasm prevalence and incidence is in preparation. latter group, .% of accidents occurred at home,
Diseases of the digestive system as a primary .% in a residential home, .% in a mental
cause of death were . times more common than hospital and .% of accidents in an institution for
in the general population and associated with pro- cases with ID; the place of residence was not men-
found ID and male sex (Tables & ). Intestinal tioned in .% of cases. For accidents, the level of
obstruction was the primary cause of death in ID was profound in .% of cases, moderate in
(%) cases, out of which had profound ID, and .% and mild in .% of cases. Moderate ID
ulceric perforation in (%) cases, mostly indi- and age > years were significant risk factors
viduals with mild ID. The mean age at death was (P < . in logistic regression), as
. years, but only . years for people with pro- were community settings and mental hospitals.
found ID. Fatal fractures were the most common primary
There were neurological causes of death, out cause of death (n = ), and were caused either
of which the most common were epileptic seizures by falling or being hit by a car. Drowning in a lake
(n = ) and dementia (n = ). People who died of was a second common cause, while intoxication and
neurological disease were younger (mean burns were rare.
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K. Patja et al. • Cause-specific mortality
Table 5 Observed and expected deaths of men with intellectual disability with age-standardized relative mortality compared with the general
population aged from to years (. = similar risk as the general population)
Confidence
intervals
Age
group
(years) Cause of death Observed Expected Relative risk Lower Upper
Immediate causes of death and was the most common cause and was mentioned in
contributing factors .% of death certificates. Epilepsy contributed to
death in cases (.%).
The circulatory diseases were the dominant cause
of immediate death, followed by pneumonia. There
Obduction rate and coding of causes of death
were cases of pneumonia caused by a foreign
body and instances of aspiratory pneumonia. Obduction was performed in % of cases. The
Psychiatric disorders were most frequently men- annual obduction rate varied greatly from % to
tioned as a contributing disease (one-quarter of all %, with an increase in the s. There was no
death certificates; Table ). Neurological diseases difference between the pattern of ID in obducted
were registered in % of deaths and cardiac dis- and non-obducted people. Men were more often
eases equally often (Table ). Intellectual disability obducted than women and obducted people were
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K. Patja et al. • Cause-specific mortality
Table 6 Observed and expected deaths of women with intellectual disability with age-standardized relative mortality compared with the
general population aged from to years (. = similar risk as the general population)
Confidence
intervals
Age
group
(years) Cause of death Observed Expected Relative risk Lower Upper
younger. Cases with an external cause were all death was primarily epilepsy, such as falling or suf-
obducted. In addition, congenital disorders, gas- focating during the seizure.
trointestinal causes and neoplasms had higher
obduction rates than other categories.
There was occasional inaccuracy in coding the
Discussion
primary cause of death. The ID was coded as a
primary cause of death in cases and psychiatric Finland was a stable welfare state during the
disease in cases (none in suicide), despite the follow-up period, although there were many
fact that ID, for example, is a manifestation of neu- changes in the care of people with ID. The s
rological disorder rather than an independent saw the establishment of a nation-wide system of
cause. On the other hand, epilepsy was coded as a health and social services with regional governance
contributing factor in cases where the cause of and large institutions. The concept of normalization
© Blackwell Science Ltd, Journal of Intellectual Disability Research , –
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K. Patja et al. • Cause-specific mortality
Table 7 Observed and expected deaths from respiratory diseases of persons with intellectual disability with age-standardized relative mor-
tality compared with the general population aged from to years (. = similar risk with the general population)
Men Women
Age
group
(years) Level of ID Observed Expected Risk ratio Observed Expected Risk ratio
was set as a goal for the welfare service system was limited to those aged – years at the outset,
(Wolfensberger ), and from the s onwards, prohibiting the calculation of risk for children
the institutional population has declined rapidly. under years. The number of deaths was relatively
The health care constitution renewed in large, enabling the calculation of cause-specific
emphasizes that discrimination on the basis of risks for all levels of ID as well as an analysis of
illness or disability is forbidden at all levels of risk factors. Since the study was population
society, which diversified the supply of services in based, and the distribution of sex and age was
the community, in spite of the severe economic controlled during the analysis, the major differences
depression suffered at the beginning of the s. in cause-specific mortality patterns compared to the
These changes have undoubtedly had an effect on general population cannot be explained by the
the mortality figures, which can be seen as one sample.
outcome measure of the service system (Härö The three most common diseases primarily
). causing death in both sexes of this population were,
The present study is the largest nation-wide, in order, cardiac diseases, respiratory diseases and
population-based sample of people with ID with a neoplasms. In the general population, the major
high rate of retention of subjects. The prevalence of killers of women and men were cardiac diseases,
ID in the study was comparable to later neoplasms, and respiratory diseases for women and
studies (Balakrishnan & Wolf ; Slavica et al. external causes for men (Statistics in Finland ).
). The lengthy follow-up period, using accurate Interestingly, the overall tumour prevalence in the
and extensive statistics, increased the reliability of study cohort was only half of that in the general
the present study. There was comprehensive data population (Statistics in Finland ) and this
available on individuals after , permitting reli- finding calls for further investigation. The popula-
able ID classification and coding of background tion with ID is predisposed to different physiologi-
variables such as associated disorders. This sample cal and environmental risks, which produce
© Blackwell Science Ltd, Journal of Intellectual Disability Research , –
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K. Patja et al. • Cause-specific mortality
disparities in mortality patterns leading to different Tuberculosis did occur, but only in early years,
life expectancy and sex distribution (Patja et al. reflecting the end of tuberculosis era in the s.
a). Chronic obstructive pulmonary disease is connected
The degree of ID had a clear influence on the with smoking and occupational exposures, and
risk of dying from a certain disease. As the degree although the diagnosis of COPD has developed
of ID progressed from profound to mild, the rather recently, its low presence here is also
disease mortality profile moved toward that of the explained by lower exposure to the known risk
general population, yet some contrast persisted. The factors (van Schrojenstein Lantman-de Valk et al.
fact that the relative risk of death caused by disease ).
was high until reveals the physiological fragility Individuals with ID suffer more than others from
of the child and adolescent population with severe constipation (Van Winckel et al. ) and chronic
or profound ID, and leads to the assumption of a regurgitation (Rogers et al. ), which increase
healthy survivor effect in the older age groups. the risk of intestinal obstruction and peptic ulcer,
Interestingly, the sex difference in mortality rates respectively. This was verified in the present study
was less than in the general population, but the at rates comparable to previous studies (Jancar &
men’s risk was higher than women’s than women Speller ). Why men in the present study were
until adulthood. more vulnerable to digestive diseases than women,
The proportion of cardiac diseases was higher contrary to previous findings, remains unanswered
than previously reported (Eyman et al. ; (Jancar & Speller ). Medication for peptic
Raitasuo et al. ). Because cardiac diseases are ulcers was not in common use until the last decade
common in Finland, these may be favoured in of the follow-up period, which suggests a decline in
medico-legal examinations, but the different study peptic ulcers.
population with more mildly disabled people may Accidents and other violent causes were responsi-
also increase the number of cardiac diseases. Inter- ble for less deaths than in the general population.
estingly, there was a lower occurrence of cardiac Moreover, the difference between the sexes found
diseases in adult age groups of both sexes com- in the general population (.% males versus .%
pared to the general population, suggesting the females) was not present (Statistics in Finland
different impact of both protective factors as non- ). Adult males without ID often die in acci-
smoking and low blood pressure (van Schrojenstein dents and other violent circumstances, and the
Lantman-de Valk et al. ), and predisposing resulting difference in the mortality pattern leads to
factors such as obesity (Rimmer et al. ). On better survival of adult males with ID (Patja et al.
the other hand, children and adolescents with ID a). Furthermore, the suicide rate of Finnish
have more congenital heart malformations than men with ID is only one-third of the rate in the
normal children (Grech & Gatt ), leading to general male population (Patja et al. b).
higher mortality, although this was of lower magni- Domestic settings cause exposure to more and
tude in the present study than in previous reports greater varieties of accidents than institutional care.
(Similä et al. ). People with mild and moderate ID live more often
The excess of respiratory mortality, mainly in community, and so the level of ID also tends to
caused by pneumonia, was expectedly high and increase vulnerability. Older people are more likely
linked with high levels of ID (Chaney et al. ). to suffer from visual impairments caused by age
As the risk was at least three-fold throughout life in (van Schrojenstein Lantman-de Valk et al. ),
both sexes, ID encompasses a greater risk of respi- predisposing to accidents. Since accidents are
ratory death than mere neurological damage, and as avoidable in most cases, special attention should
in the general population, respiratory diseases accu- be paid to the safety of community surroundings
mulate in old age. Gastro-oesophageal diseases and to sensory impairments which compromise
(Kuruvilla & Trewby ), dysmorphias of the oral mobility.
cavity (Gabre et al. ) and immunological Cause-specific mortality offers baseline informa-
deficits (Ugazio et al. ) more commonly predis- tion for health promotion and preventative work.
pose to respiratory diseases in this population. The alarming increase in the risk of death in com-
© Blackwell Science Ltd, Journal of Intellectual Disability Research , –
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39
K. Patja et al. • Cause-specific mortality
munity settings compared to institutions found in Dupont A., Vaeth M. & Videbech P. () Mortality, life
some studies (Strauss & Kastner ) is more a expectancy and causes of death of mildly mentally
retarded in Denmark. Uppsala Journal of Medical Sci-
reflection of the normalization of cause specific
ences (Suppl.), –.
risks resulting from external causes – and lack of
Eyman R. K., Chaney R. H., Givens C. A., Lopez E. G.
prevention – than of community settings as an
& Choon Kang E. L. () Medical conditions
independent risk factor. As people with ID move underlying increasing mortality of institutionalized
from institutions into the community, they are persons with mental retardation. Mental Retardation ,
exposed to the similar environmental risks to the –.
general population, including shortage of health Eyman R. K., Grossman H. J., Tarjan G. & Miller
care resources. If we intend to decrease the avoid- C. R. () Life expectancy and mental retardation. A
able mortality in this group, then we need to focus longitudinal study in a state residential facility. Mono-
graphs of the American Association on Mental Defi-
specially on accident risks, on preventing infections ciency. Washington DC.
and cardiac diseases, and on health promotion in
Forssman H. & Åkesson H. O. () Mortality of the
the community. At least in Finland, where health mentally deficient: a study of , institutionalised
care is unlikely to receive additional funding and subjects. Journal of Mental Deficiency Research ,
work loads are expanding rapidly, we are forced to –.
choose. Fortunately, preventative work is seen to be Gabre P., Martinsson T. & Gahnberg L. () Incidence
profitable, and we need to include people with ID of, and reasons for, tooth mortality among mentally
and their unique needs in this process. retarded adults during a -year period. Acta Odontolog-
ica Scandinavica , –.
Grech V. & Gatt M. () Syndromes and malformations
associated with congenital heart disease in a population-
Acknowledgements based study. International Journal of Cardiology ,
–.
This study was supported by the Ministry of Social
Härö A. S. () Surveillance of Mortality in the Scandina-
Welfare and Health, the Juho Vainio Foundation,
vian Countries –. The Social Insurance Institu-
the Finnish Paediatric Foundation, and the tion, Helsinki.
Rinnekoti Foundation. Jancar J. & Speller C. J. () Fatal intestinal obstruction
The authors would like to give special thanks to in mentally handicapped. Journal of Intellectual Disability
Hanna Oksanen PhD for statistical guidance. Research , –.
Kuruvilla J. & Trewby P. N. () Gastro-oesophageal
disorders in adults with severe impairment. British
Medical Journal , –.
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