Introduction: Effective planning for paediatric palliative care services requires an understanding of the clinical and demographic characteristics of the population requiring palliative care, and of their health service usage. However, the lack of readily available data for children and young people, means that the actual need, demand and supply of paediatric palliative care services is not known.
Aims: This study aimed to generate data to inform health service planning by determining for the 2011 and 2016 calendar years, the clinical and demographic characteristics of children and young people aged 0 to 21 years, living in Queensland with a life-limiting condition eligible for palliative care, and estimating their health service usage,
Methods: Queensland Health administrative data collections (Queensland Hospital Admitted Patient Data Collection, Perinatal Data Collection and Deaths Register) were linked by the Queensland Statistical Services Branch and relevant data extracted for analysis. Children and young people were identified using International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Australian Modification codes, as contained in the Hain’s Directory of Life-limiting Conditions.
Results: The overall prevalence of life-limiting conditions per 10,000 population increased from 35.2 (95% CI 34.2 to 36.2) in 2011 to 43.2 (95% CI 42.1 to 44.4) in 2016. Non-oncological conditions represented 87.3% of conditions in 2011 and 88.6% in 2016. The highest proportion of children with a life-limiting condition were less than 1 year of age (n=1350, 30% in 2011 and n=1576, 27.5% in 2016). From 2011 to 2016, hospital admissions by children and young people with a life-limiting condition increased by 29,6% (n=5318). Those with neoplasms had the greatest number of admissions for 2011 and 2016 (6174, 34.4% and 7206, 31.0% respectively).
Implications for Practice: These findings can be used to better inform health service planning for paediatric palliative care in Queensland.
Conclusion: There remains an urgent need for readily available information to inform health service planning for paediatric palliative care in Australia.
Conflict of interest: Dr Bowers is a member of the 2022 PCNA Conference Organising Committee.
Funding: Dr Bowers completed this study for her PhD. She received a scholarship from Queensland University of Technology and a top-up scholarship from the NHMRC CRE in End-of Life Care.