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Oceanic Palliative Care Conference 2023
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Palliative care use by people with intellectual disability: A linked data study in NSW, Australia

Poster Presentation

ePoster

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Presentation Description

Institution: Department of Developmental Disability Neuropsychiatry, UNSW Sydney - New South Wales, Australia

Background: People with intellectual disability experience increasing rates of age-related and life-limiting conditions but encounter barriers to palliative care (PC) services. There is currently a lack of data on PC access and quality for people with intellectual disability in Australia.
 
Aim: To demonstrate feasibility and utility of data linkage to examine PC use by people with intellectual disability in New South Wales (NSW).
 
Methods: Using an existing linked dataset (n=100,524 people with intellectual disability and n=457,590 age-, sex- and location- matched people without intellectual disability), information was extracted about PC use (Admitted Patients Data Collection, 2001-2021; Medicare Benefits Schedule, 2001-2018) and deaths (Registry of Births, Deaths and Marriages, 2001-2021; National Death Index, 1980-2019). Data from 22,130 individuals who died (8,328 people with intellectual disability) were summarised using descriptive statistics.
 
Results: Leading underlying causes of death for people with intellectual disability were circulatory diseases (18%), neurological conditions (17%), and cancer (15%). For people without intellectual disability these were cancer (32%), circulatory diseases (24%), and accidents/injuries (13%). Overall, fewer people with intellectual disability had any record of PC use (20% of all deaths, 53% of deaths from cancer) than people without intellectual disability (27% of all deaths, 63% of deaths from cancer), but this differed by age at death. The proportions of people who accessed PC were higher among younger people with intellectual disability (12-22% across 5-year age-bands from 0-44 years) than in younger people without intellectual disability (5-18%). However, access was lower for older people with intellectual disability (14-23% across 5-year age-bands from 45-≥85 years) than older people without intellectual disability (29-37%). 
 
Conclusions: Preliminary findings demonstrate feasibility and utility of data linkage to examine PC use by people with intellectual disability, and suggest underutilisation by older people with intellectual disability. Linkage to other datasets would capture broader service settings and outcomes.  

Presenters

Authors

Authors

Dr Rachael Cvejic - Department of Developmental Disability Neuropsychiatry, UNSW Sydney , Dr Preeyaporn Srasuebkul - Department of Developmental Disability Neuropsychiatry, UNSW Sydney , Professor Claire Vajdic - Kirby Institute, UNSW Sydney , Professor Meera Agar - University of Technology Sydney & South Western Sydney Local Health District , Dr Peiwen Liao - Department of Developmental Disability Neuropsychiatry, UNSW Sydney , Dr Adrian Walker - Centre for Big Data Research in Health, UNSW Sydney , Dr Janelle Weise - Department of Developmental Disability Neuropsychiatry, UNSW Sydney , Ms Tracey Szanto - NSW Agency for Clinical Innovation , Ms Janeane Harlum - South Western Sydney Local Health District , Dr Rebecca Strutt - South Eastern Sydney Local Health District , Associate Professor Simone Reppermund - Department of Developmental Disability Neuropsychiatry, UNSW Sydney , Mrs Maria Heaton MSN, GCPPC - STrIDeS Sydney Local Health District , Professor David Currow FAHMS - University of Wollongong , Clinical Professor Richard Chye - St Vincent’s Hospital, Sydney , Mr Amanuel Hagos - Department of Developmental Disability Neuropsychiatry, UNSW Sydney , Ms Olivia Burton - Department of Developmental Disability Neuropsychiatry, UNSW Sydney , Professor Julian Trollor - Department of Developmental Disability Neuropsychiatry, UNSW Sydney

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