Mortality of people with intellectual disability in northern Sydney

1
Mortality of people with intellectual disability
in northern Sydney

• Dr Seeta Durvasula
• Centre for Developmental Disability Studies
• University of Sydney
• seetad_at_med.usyd.edu.au

2
Outline of talk

• Background
• Aims of study in northern Sydney
• Results
• Implications

3
Background

• Life expectancy in people with intellectual
  disability (ID)
• Finland 35 year follow up of population
• mild ID - no decrease in life expectancy
• profound ID - gt20 of expected life lost
• (Patja K et al. 2000, JIDR)
• Australia - up to 20 years less than general
  population (Bittles et al. 2002)

4
Standardised Mortality Ratios (SMR)

• SMR Comparison of death rates with general
  population death rates, adjusting for age and
  gender differences
• Sweden (Forsgren et al, 1996)
• SMR 2.0
• England (Hollins et al, 1998)
• SMR 9.6, 18.0

5
Aims of Northern Sydney study

• Compare rates of death in people with ID in
  northern Sydney to those in general local
  population
• To determine main causes of death
• To determine associated factors, and those
  leading to premature and avoidable deaths
• To make recommendations for prevention

6
Methods Part 1

• People with ID identified in 1989-90 in Lower
  North Shore (Beange Taplin, 1996)
• Determine how many people had died between
  1989-1999, and causes of deaths
• Registrar of Births, Deaths Marriages
• Hospital records
• Public Health Unit - local general population

7
Results Part 1

• 693 individuals with intellectual disability
  identified in northern Sydney in 1989
• 3-50 years of age when identified
• men 55.4 women 44.6
• Of these, 39 people died 1989-99
• men 55.0 women 45.0
• age range 10 - 59 years
• median age of death 32 years
• 50 lived in a large residence at time of death

8
Age distribution
9
Comparison with death rates in Lower North Shore
population
10
Intellectual function
11
Standardised Mortality Ratios

• Total SMR - 4.9
• SMR males - 4.1
• SMR females - 6.2

12
Main causes of death
13
Methods Part 2

• Information from
• hospital records
• State Coroners records
• records of one residential facility where a
  number of people had lived
• structured interviews with family members
• Comparison with control group
• 202 adults from northern Sydney cohort
• (Beange et al, 1995)

14
Results

• Records obtained from main tertiary hospital for
  30 people (77)
• Reports to State Coroner
• 13 people (33)
• all records reviewed
• All records of those in one residential facility
  reviewed
• Interviews with 14 families (36)

15
Main health conditions present

• In those people where information was available
• Epilepsy - 49
• 29 of control group
• Chronic respiratory disease - 38
• 10 of control group
• Vision impairment 35
• Hearing impairment 24
• Alzheimers disease 9

16
Number of hospitalisations

• Hospital admissions in previous year
• study group - 30
• control group - 18

17
Functional abilities
18
Supervision levels

• 63 had 24 hour supervision
• 14 had part time supervision
• 22 had drop in supervision

19
Preventable deaths

• 28 (11) of deaths considered to be preventable
• 64 (7) of these were in people with
  mild-moderate range of intellectual disability

20
Preventable deaths

• 4 deaths related to supervision or response to
  emergencies
• 2 people with history of epilepsy drowned
• Corner identified poor supervision as factor
• One person choked on food
• Coroner identified inappropriate level of first
  aid
• 1 person run over by train
• Travelling home alone

21
Preventable deaths

• Five deaths due to late presentation or delayed
  diagnosis
• Two people died of cancer that was diagnosed late
• one person presented late to hospital with
  septicaemia
• two people presented late to hospital with
  pneumonia

22
Preventable deaths

• Two deaths due to adverse surgical events
• peritonitis following problems with sutures after
  bowel surgery
• perforated ulcer 3 days after laparotomy (not
  diagnosed)

23
Summary

• People with intellectual disability in northern
  Sydney had almost 5 times the death rate of the
  general population in northern Sydney
• Respiratory disease most common cause of death
• Median age of death 32 years

24
Summary

• People who died had
• had higher rate of epilepsy and respiratory
  illness
• had more hospital admissions in the year prior to
  death
• Had higher support needs
• Almost 30 of deaths considered to be preventable

25
Summary

• Indicates need for
• Greater staff training in recognising need for
  medical care, and in first aid
• Greater supervision of those who are at risk
• Improved training of medical professionals in
  recognising symptom presentations in people with
  intellectual disability

26
NSW Ombudsman Review of Reportable Deaths in 2005

• Average age of death 49 years
• Main causes of death respiratory disease, heart
  disease, cancer
• Had co-existing chronic health conditions, e.g.
  epilepsy, dysphagia
• Required support for activities of daily living

27
Review of Reportable Deaths in 2005 Key
recommendations

• Improve identification/management of risks
• e.g. Nutrition and Swallowing, medication
• Support staff to have First Aid qualifications
• Ensure all with epilepsy have Epilepsy Management
  Plan
• Improve record keeping
• Strategies to improve access to health services