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Presented by:Bruce D. McCreary, MD FRCPC
Department of Psychiatry, Queen’s University
*Tom Cheetham, BA, MD, CCFP
Sandip K. SenGupta, MD, FRCPC, FCAP
Dianne Groll, MSc, PhD
* Corresponding author
� 70 – 80 % Increase in death rates in those moving from
institutions to the community
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Characterize mortality patterns with Rideau Regional Centre in
relation to implications for
community-based care.
ALL YearsALL YearsALL YearsALL YearsN=275N=275N=275N=275
1979 1979 1979 1979 –––– 88888888n=89n=89n=89n=89
1989 1989 1989 1989 ----98989898n=102n=102n=102n=102
1999 1999 1999 1999 –––– 08080808N=84N=84N=84N=84
Males 164 (59.6%) 55 (61.8%) 60 (58.8%) 49 (58.3%)
Females 111 (40.4%) 34 (38.2%) 42 (41.2%) 35 (41.7%)
Intellectual Impairment
Profound 164 (59.6%) 52 (58.4%) 69 (67.6%) 43 (51.2%)
Severe 58 (21.1%) 12 (19.1%) 26 (25.5%) 15 (17.9%)
Moderate 9 (3.3%) 6 (6.7%) 1 (1%) 2 (2.4%)
Mild 10 (3.6%) 2 (2.2%) 6 (5.9%) 2 (2.4%)
Unspecified 34 (12.4%) 12 (13.5%) 0 22 (26.2%)
Clinical Group*
Down Syndrome 39 (14.2%) 11 (12.4%) 15 (14.7%) 13 (15.5%)
Cerebral Palsy 92 (33.5%) 36 (40.4%) 25 (24.5%) 31 (36.9%)
Epilepsy 129 (46.9%) 32 (36.0%) 59 (57.8%) 38 (45.2%)
Cerebral Palsy and Epilepsy
54 (19.6%) 15 (16.9%) 19 (18.6%) 20 (23.8%)
None 83 (30.3%) 27 (30.3%) 27 (26.5%) 29 (34.5%)
Autopsy (yes) 48 (17.0%) 21 (23%) 18 (16%) 9 (10%)
Age at death in years: means, (SD)
45.4 (16.4) 31.84 (13.6) 48.2 (14.2) 56.4 (11.0)
IntervalIntervalIntervalInterval Age RangeAge RangeAge RangeAge
Range Mean AgeMean AgeMean AgeMean Age
MaleMaleMaleMale FemaleFemaleFemaleFemale MaleMaleMaleMale
FemaleFemaleFemaleFemale
1979 -88 9 - 63 11 - 79 31.9 29.7
1989 -98 18 - 80 20 - 80 46.3 50.5
1999 -2008 34 - 76 28 - 86 55.0 57.6
*164 males, 111 females*164 males, 111 females*164 males, 111
females*164 males, 111 females
IntervalIntervalIntervalInterval All SubjectsAll SubjectsAll
SubjectsAll Subjects ProfoundProfoundProfoundProfound
SevereSevereSevereSevere ModerateModerateModerateModerate
MildMildMildMild UnspecifiedUnspecifiedUnspecifiedUnspecified
1979 - 88 31.8 32.6 30.0 36.3 34.0 28.3
1989 - 98 48.0 46.1 50.6 45.0 59.3 --
1999 - 2008 56.5 53.8 56.6 61.0 69.0 60.4
* 164 profound, 58 severe, 9 moderate, 10 mild, 33 unspecified*
164 profound, 58 severe, 9 moderate, 10 mild, 33 unspecified* 164
profound, 58 severe, 9 moderate, 10 mild, 33 unspecified* 164
profound, 58 severe, 9 moderate, 10 mild, 33 unspecified
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IntervalIntervalIntervalInterval Mean Age at DeathMean Age at
DeathMean Age at DeathMean Age at Death
All SubjectsAll SubjectsAll SubjectsAll Subjects Down Down Down
Down SyndromeSyndromeSyndromeSyndrome
EpilepsyEpilepsyEpilepsyEpilepsy Cerebral Cerebral Cerebral
Cerebral PalsyPalsyPalsyPalsy
Epilepsy and Epilepsy and Epilepsy and Epilepsy and
CerebralCerebralCerebralCerebralPalsyPalsyPalsyPalsy
1979 - 88 31.8 29.6 31.6 28.5 28.4
1989 - 98 48.0 49.0 45.9 51.1 43.1
1999 - 2008 56.5 56.9 57.2 54.9 49.8
* * * * Down Syndrome 38, Epilepsy 74, Cerebral Palsy 39,
Epilepsy Down Syndrome 38, Epilepsy 74, Cerebral Palsy 39, Epilepsy
Down Syndrome 38, Epilepsy 74, Cerebral Palsy 39, Epilepsy Down
Syndrome 38, Epilepsy 74, Cerebral Palsy 39, Epilepsy andandandand
Cerebral Palsy 54Cerebral Palsy 54Cerebral Palsy 54Cerebral Palsy
54(Individuals may have more than one diagnosis)(Individuals may
have more than one diagnosis)(Individuals may have more than one
diagnosis)(Individuals may have more than one diagnosis)
#### 89 deaths89 deaths89 deaths89 deaths #### 102 deaths102
deaths102 deaths102 deaths #### 84 deaths84 deaths84 deaths84
deaths
Respiratory InfectionsRespiratory InfectionsRespiratory
InfectionsRespiratory Infections 43434343 26262626 25252525
Sudden DeathsSudden DeathsSudden DeathsSudden Deaths• Heart
Attacks•Strokes•Pulmonary embolism•Epilepsy•Trauma•Asphyxia
2626262622121
18
4141414152-4-
30
2929292921-4-
22
CancerCancerCancerCancer•Colorectal•Esophagus•Ovary•Other
Sites
444421-1
121212122127
99993213
Cardiac FailureCardiac FailureCardiac FailureCardiac Failure
1111 3333 7777
Gastrointestinal DisordersGastrointestinal
DisordersGastrointestinal DisordersGastrointestinal
Disorders•Volvulus•Peritonitis•Gastric
hemorrhage•Cirrhosis•Obstruction•Infarction•Other
11111111432-11-
99991--2114
55553-----2
Metabolic CausesMetabolic CausesMetabolic CausesMetabolic Causes
1111 ---- ----
Other* and UnknownOther* and UnknownOther* and UnknownOther* and
Unknown•Renal Failure•Alzheimer’s disease•Other•Unknown Cause
33331-2-
111111114151
99992223
1979 1979 1979 1979 ---- 88888888 1989 1989 1989 1989 ----
98989898 1999 1999 1999 1999 ---- 2008200820082008
****Other 1979 Other 1979 Other 1979 Other 1979 –––– 88 88 88 88
Hypothermia
Osteogenesis imperfecta
Other 1989 Other 1989 Other 1989 Other 1989 –––– 98989898
Generalized arteriosclerosis
Endocarditis
Hepatitis
Diabetic acidosis
Acute asthma
Other 1999 Other 1999 Other 1999 Other 1999 –––– 2008 2008 2008
2008 Ruptured abdominal aneurysm
Pyelonephritis
Table 5 NUMBER OF DEATHS BY CAUSE BY INTERVAL
Age (years)
NumberofIndiv.
Age/Age/Age/Age/GenderGenderGenderGender
Disability ProfileDisability ProfileDisability ProfileDisability
Profile Medical ProfileMedical ProfileMedical ProfileMedical
Profile Cause of DeathCause of DeathCause of DeathCause of Death
Neuropathologic Neuropathologic Neuropathologic Neuropathologic
FindingsFindingsFindingsFindings
Brain Brain Brain Brain WeightWeightWeightWeight
28 M Profound IDIdiopathic
Pica (Latex Glove)
Massive gastrointestinalhemorrhage
None specific 1116 gms.
29 M Profound ID Pertussisencephalopathy at 5months
EpilepsyChronic PulmonaryFibrosis. Found dead in bedearly am
Sudden death ofepilepsy
Cortical neuronal loss and gliosis in hippocampus
1195gms.
52 M Profound ID Down Syndrome
DementiaEpilepsy
Bronchopneumonia Severe Alzheimer’s
neuropathology,Congophillicangiopathy
1033 gms.
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QUESTIONS ?
