Reviewing causes of death of individuals with intellectual disability in New South Wales, Australia: a record-linkage study.
Half of death certificates for adults with ID in residential care were wrong until formally reviewed—always ask for the corrected version.
01Research in Context
What this study did
Thomas et al. (2021) looked at death certificates for adults with intellectual disability living in New South Wales residential care. They compared the first cause of death written on the form with the final cause after a formal review panel checked hospital notes and doctor letters.
The team wanted to know how often the first guess was wrong and which kinds of errors happened most.
What they found
About half of the original causes of death were changed after review. Mental and behavioural disorders were the most likely to be re-labelled.
In short, the paperwork you see first may not tell the real story.
How this fits with other research
Lowe et al. (1995) tracked deaths in a similar residential setting 26 years earlier. They simply counted what was written and saw respiratory infections topping the list. R et al. now show those old counts could be off by 50%.
Ghaziuddin (1997) described high internal illness in older clients but trusted the written diagnosis. The new findings suggest those illness labels might also need a second look.
Together, the older papers give the baseline picture; R et al. warn us to doubt the labels until they are reviewed.
Why it matters
If you use mortality data to plan health screenings or argue for funding, demand the reviewed file, not the first certificate. Flag any death listed as due to a mental or behavioural cause and ask for the panel verdict. Accurate numbers drive better policy and better care for the people still living in the home.
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02At a glance
03Original abstract
BACKGROUND: People with intellectual disability (ID) have a much higher mortality rate than the general population. To reduce the rate of mortality of people with ID, it is critical that causes of death are properly understood, recorded and reported. Formal reviews of causes of death are used in some countries to ensure that causes of death are accurate. To date, the impact of these formal reviews on understanding causes of death of people with ID has not been quantified. METHODS: The study aimed to quantify the impact of formal reviews of deaths on the understanding of causes of death of people with ID who died while living in residential care. Individuals (851) with ID who died in residential care in New South Wales (NSW), Australia, between 1 December 2002 and 31 December 2013, who had a cause of death recorded in both the NSW Cause of Death Unit Record File (COD-URF; cause of death recorded at time of death) and NSW Ombudsman dataset (cause of death recorded after in-depth review) were included in the study. We assessed agreement in coding for cause of death by comparing the International Classification of Diseases 10th Revision (ICD-10) codings at three levels of diagnostic specificity, for both underlying and additional causes of death. We conducted our analysis through both descriptive comparison and through two boosted regression trees. RESULTS: Approximately half of the underlying causes of death were different after review by the NSW Ombudsman compared with the COD-URF. Certain causes of death (determined by ICD-10 chapter) were less likely to predict matches between the dataset than others, with individuals with mental, behavioural and neurodevelopmental disorders recorded in the COD-URF least likely to have a matching cause of death in NSW Ombudsman dataset. For deaths where there was no agreement at any level between the datasets, a high level of unknown causes of death was recorded. CONCLUSIONS: Formal review of deaths of people with ID in residential care is important to determining true causes of death and therefore developing appropriate health policy for people with ID.
Journal of intellectual disability research : JIDR, 2021 · doi:10.1111/jir.12888